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Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Dan’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Dan W. profile

At 34, Dan was diagnosed with stage 4 ALK+ non-small cell lung cancer.

He shares the importance of patient advocacy, sharing your story and experiences, having doctors in your corner and willing to fight for you, and being honest and open with your children.

  • Name: Dan W.
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
    • ALK+
  • Staging: 4
  • Symptoms:
    • Cold symptoms
    • Shortness of breath
    • A little bit of tightness in the chest
    • Loss of voice
  • Course of Treatment:
    • Stent placement
    • Radiation
    • Targeted therapy

Being a dad is something that’s very special for me so I don’t think I took it for granted. I think it just has more meaning now being able to do those things

Dan W. timeline

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Dan W. and family in Halloween costumes

Pre-diagnosis

Introduce yourself a little bit

I like to have a great time. I try to see [the] positivity in things, even before [my] cancer diagnosis. I try and get along with a lot of people. I really want to have positive interactions with people that I come across, whether it’s just meeting them for the first time or just saying hi to someone. [I’m] very loving and outgoing.

[I have a wife and] two daughters. Francesca is seven and Georgia is five. The oldest one is named after [my wife’s] grandmother and my grandfather and goes by the name of Frankie.

My oldest is very outgoing [and] has to have social interaction [on] any given day or any given time. She’s very much like me. Always has something to say. She’s been talking as long as she could get a word out. She’ll talk until she falls asleep every night.

Georgia is very shy. She just turned five. She likes to hide behind us and [have] us as a sense of security. But when she’s out with friends, family and people that she’s comfortable with, she’s just as outgoing as Frankie is, so it’s great to see that side of her personality come out when she gets comfortable with people.

It wasn’t until a CT scan was performed that they had come across a large mass in my chest.

Initial symptoms

I started with cold symptoms about mid-November of 2018. Then the cold just wouldn’t go away. It progressed into shortness of breath, a little bit of tightness in the chest, [and loss of] my voice.

[I was] going to my primary care physician and just being pumped with steroids or inhalers — nothing seemed to work at any point and no additional tests were ordered. It was all the way until the very end of January [2019] that I was chasing my youngest across the dance studio and I was out of breath within steps. I had already exhibited symptoms of being out of breath easily doing other things, but I was always resilient to push through.

I had a telemedicine appointment and the doctor said, “You could have had a minor heart attack at some point. We need you to go to the E.R.” I went to the E.R. and a number of tests were done. It wasn’t until a CT scan was performed that they had come across a large mass in my chest.

Diagnosis

The doctor had come in to tell me, “You have a large mass in your chest. We’re pretty sure it’s cancer. And we think it’s lymphoma.”

My uncle had passed away from non-Hodgkin’s lymphoma just after six months of being diagnosed back in the mid-2000s and the first thought that ran through my head [was] what his kids went through. Not necessarily him but what his family went through because of the diagnosis.

It struck home for me right away and I knew it was serious at that point.

Things really get real and put into perspective when someone throws around a cancer diagnosis.

Receiving the news

I didn’t go to the hospital until about 10:00 or 10:30 at night. It wasn’t until two, three o’clock in the morning that the doctor had actually come back into the room in the E.R. I was by myself not thinking that anything was going on [and] wasn’t really scared going to the hospital in any way.

My wife stayed home with our girls because, obviously, they couldn’t stay at home alone. At that point, I called my wife and we had a family member come over and watch the kids. Then my wife rushed over as soon as she could.

Dan W. daughters at the beach
Thinking about your children

Children’s innocence was so prevalent in my mind at that point. The thought that they don’t know what cancer is, what it means… if they had to put their mind around something, it’s just probably going to be death associated with cancer.

The thought that my kids would grow up without a dad or without that influence in their life, it was really hurtful to me. Not that I ever took life for granted, but things really get real and put into perspective when someone throws around a cancer diagnosis.

How do I tell my children about my cancer diagnosis? »

They were four and two, so pretty extreme for them to hear that daddy has cancer.

Getting the official diagnosis

From the day that I went into the hospital, I would say 10 or 11 days later, we realized that it was non-small cell lung cancer. At that point, it was at least stage three and they were going to do some staging.

In the coming week or two, there were a number of different staging tests that I had gone through and biopsies to determine [if it was] stage three or stage four.

It was a snowy Tuesday. My wife, a school teacher, was home from school. I was working from home. We had received a phone call from the lymphoma oncologist as well as the interventional pulmonologist who had done the bronchoscopy to get the sample. They had given us three ideas of what it could have been — sarcoidosis, lymphoma, and lung cancer. We’re not expecting lung cancer, but here it is. We’re going to tell you it could be lung cancer, but we really don’t think it’s that.

When that Tuesday afternoon came and they called, they asked us to write some things down. Thankfully, my wife was home. They gave us the news that it was lung cancer; at that point, at least stage three. But I had a biomarker, a driver behind my cancer that was ALK-positive. We had no idea what that meant.

In a career that’s not medically related in any way and my wife being a teacher, we’re street smart at that point. She’s much more book smart than I am, but [we] immediately went to survival mode. Let’s start looking up what this means. Let’s see who to see in situations like this. Second opinions. Who do we go to? Who do we talk to? What are our resources and how do we navigate this new norm for us? Because, at this point, we didn’t know therapies, treatment, [or] what was going on in that initial diagnosis, so a lot of unknowns for us.

Dan W. and wife with fireworks
Reaction to the diagnosis

It’s kind of a blur, to be honest. There [are] so many vivid memories from a lot of the events that had taken place.

Your life is a whirlwind when you’re first diagnosed or when you’re going through some of those traumatic experiences [in] that you don’t remember everything. Some things stick out more than others, but I remember placing the call. I remember the doctor coming in, sitting on the bed, and saying that to me, but I don’t recall when she had come in.

I thought about my kids. Cancer sometimes runs in your family. Is this something that I can pass on to my kids? Is this genetic mutation something that would also be related to my brothers? I’m one of four. Do I need to have a conversation with them that they have to get screened?

What are my kids going to go through? I brought kids into this world not knowing much about cancer itself. Had I known before, would I still have brought kids into this world? Those were some of the thoughts that went through my mind.

[We] immediately went into survival mode… at this point, we didn’t know therapies, treatment, [or] what was going on in that initial diagnosis, so a lot of unknowns for us.

Later on, as I’m starting to additionally digest some of the information, it’s — How did I get lung cancer? Where did that come from? What have I done to expose myself to second-hand smoke? Not being a smoker or [having] a history of smoking myself, what environmental factors have I been exposed to where I’m susceptible at this point to lung cancer? [I] just couldn’t really hang my hat on anything specific.

The doctors assured us that from what they can tell, it’s not environmentally driven, but there’s a switch in your body, something went off. We don’t know what caused it, but we would say that would not be environmental.

It was a little troublesome to put myself in the position of looking at how that affected my kids and my family.

The more and more that we learn is crazy. The stories that we hear, the people that we follow, the people that we become connected with and friends with, being diagnosed at such a young age and then living a healthy lifestyle is completely difficult to fathom. At the end of the day, it just doesn’t make sense to us.

Patients share how they reacted to a cancer diagnosis »

Treatment

Radiation and targeted therapy

The plan was to radiate the largest mass in my chest, at the base of my mediastinum where it splits off to either lung. That would provide relief. Largest cancer site, let’s radiate it. [I] went through five sessions — Wednesday through Tuesday, [then] Saturday and Sunday off.

It wasn’t too bad. I’m pretty resilient so if I’m tired, I’m not necessarily realizing that I’m tired. I’m just pushing through things. Probably a good quality but, at the same time, probably a bad quality where you have to listen to your body and understand what it’s telling you at times.

Once radiation was done, we were starting [the] first-line treatment with targeted therapy. The idea with the targeted therapy was, hopefully, [my] quality of life would go back to where it was before and I’d be able to do the same things that I was doing with my kids, my wife, and in my personal time prior to cancer.

Find answers to popular radiation therapy questions and experiences of radiation therapy »

Undergoing radiation and targeted therapy again

Thankfully, living in the Northeast, [there are] two great hospital systems in Philadelphia. There [are] more than just two but I focused my care at two, [partnered] with some doctors in Boston, [and] continuously reviewed the plan [and] best course of treatment. How do we continue to move forward and be as successful as possible [in] navigating my diagnosis?

The idea was to do consolidated therapy. They were going to go to the right side of my lung — top and lower lobes — and radiate. They were going to radiate those sites with the idea that if progression does occur, it’s going to most likely go back to those original cancer sites. Since it wasn’t treated previously from radiation, they wanted to go back and just clean up those spots [and] make sure that there [weren’t] any residual cells there as well.

Find answers to popular targeted therapy questions and experiences of targeted therapy »

Dan W. and wife inside inflatable lungs
Importance of biomarker testing

Neither of us [has] a background in health care or in medicine so just what you see sensationalized on TV or if you have a family member or friend that’s going through something, that’s your exposure to it if it’s not part of your expertise.

Thankfully, we have access to great healthcare systems and that was the norm for them. We just said, “Hey, something’s not right.” And they said, “We’ll help you out. We’ll take the reigns from here and do what we’re supposed to do.”

Little did we know that meant biomarker testing and so on, but we’re thankful that that was done and identified very early on. Hearing other people’s stories, that’s not always the case.

Advocating for yourself

You hear nightmare stories where people just go straight to chemo and certain cocktails of treatment options that are used in lung cancer can be fatal for someone who is ALK-positive. Right then and there, knowing that you’re giving something to someone from a therapy standpoint that could actually kill them before it could even help them is troublesome.

It’s so difficult when you’re putting yourself out there and someone’s telling you that what they do for a living isn’t going to help you in any way.

You just have to advocate for yourself. We did early on not knowing what we were going into and what we were navigating at that point. But it was very important for us to pull together doctors that would be in our corner and would fight for us. It wasn’t about them. It was about us as patients.

We actually had not a great experience with the hospital that I went into when I was first experiencing symptoms. We left with the intention of never coming back.

We had an oncologist come into the room the day after I was admitted and just said very vague information, didn’t have much to give from an outlook standpoint or what was going on, or what he thought was going on.

When you go to the doctor and you break a bone, you’re used to looking at an X-ray, right? You’re expecting. We did a CT scan [so we were expecting], “We’re going to show you the CT scan, what we’re looking at, and what’s going on.” He said, “I don’t read pictures.” And we were like, “What do you mean? You’re an oncologist. How do you not?” “Oh, well, we have people that do that. I don’t.”

We lost a lot of hope right then and there for any proper guidance from him as an oncologist, even just from a general standpoint. We had asked them to leave. It was a very difficult situation for us. But, thankfully, [the] interventional pulmonologist followed up and came into the room a short period later and was able to explain some things to us as to what he was seeing and navigate those scans with us.

It’s so difficult when you’re putting yourself out there and someone’s telling you that what they do for a living isn’t going to help you in any way. You get very turned off. We left a few hours later from that hospital with the intention of never coming back there.

Hear from cancer patients on what self-advocacy is and how they advocated for themselves »

Targeted therapy

I’m on targeted therapy called Alectinib. I’m very fortunate to have that accessible to me and have insurance that does cover a large portion of the cost because it is very expensive, but I’ve responded very well to it.

I have [had] stable scans since the spring of 2020, so very relieved to get that news and, hopefully, continue to get that news every quarter. It’s allowed me to be a dad. It’s allowed me to have manageable side effects, fortunately for me. I know it reacts differently for everybody.

How does Medicare cover cancer? »

Dan W. with wife and daughters

There were times early on that were very difficult. It’s a fine balance — what the medicine was doing to my body and how to react — to find that comfort zone of taking it and what am I eating that’s affecting my body. It was tough, but we’re in a much better spot now.

Eating healthy during cancer treatment »

Side effects from Alectinib

The biggest one that I’m challenged with now is being out in the sun. [I’m] very susceptible to burn and being outside as frequently as I am — I don’t like to be indoors at all. I could never live in a big city because I would never see grass. I’ve always got to be outside, so that’s very difficult.

High UV rays, going to the beach — I’m always wearing long sleeves, I’m always wearing a hat, and trying to cover up. Even in early spring, 10 minutes out in the sun on a high UV ray day, I’m getting what feels like chemical burns on my hands, on my face, on my head, and it’s difficult.

Bilirubin levels, liver functionality. There [are] a number of different known side effects that come with the therapy that I’m on so it’s all things that I’ve navigated earlier on than now but continuously monitoring that through blood tests every month.

Find out directly from cancer patients what side effects they experienced after undergoing treatments »

Everybody needs advocacy. Everybody needs a platform.

The White Ribbon Project

We’re very active on social media. My wife had seen something and had reached out to Heidi to get a ribbon to display. I didn’t really know much about it, but I’ve had numerous conversations with Heidi.

Heidi’s visions are amazing. It’s not to say that it can’t mean something different to someone else that’s involved. When someone goes and displays a ribbon, if it’s on their front door, [it] could be in support [of] someone else in their family or a friend. It may not be them. How they’re advocating or showing that they’re supporting someone or the community can be different.

When we received our ribbons, we received three and I delivered two to both healthcare systems that I was receiving care at in Philadelphia and then we kept one for [ourselves].

Find out more about The White Ribbon Project »

What does it mean to you and your family to have that?

To me, my thoughts are all-inclusive. Everybody needs advocacy. Everybody needs a platform to push whatever cancer they would like to push from an awareness standpoint. It just so happens that I have lung cancer so when I talk about cancer, it’s probably going to be about lung [cancer] and my experiences and experiences of the individuals that we’ve come across since our journey began.

It’s so important to tell your story and what that means for us is not just for us; it’s for everybody.

It’s so important to cherish that time and experiences that you do have together.

Dan W. and family at Links for Lungs Foundation event
Sharing your cancer story from a father’s perspective

It’s been powerful. It definitely puts things into perspective when it comes to life. What to be upset about, what not to be upset about. It’s okay to get upset still about little things but at the end of the day, it’s so important to cherish that time and experiences that you do have together.

I found sharing my experiences or my story has paid off for other individuals to put things into perspective for them, whether they’re going through something or not. You can always take something from an interaction with someone else and apply that to your own life.

I feel as though we’ve gotten feedback as to how we have navigated this and how we continue to tell our story and help other people [and] how powerful that is to other individuals.

Being able to go out and advocate, that’s what I want my girls to see and learn from because I think that’s really important and that will help shape them in life.

Living with cancer as a parent with young children

Very early on, we received some guidance, to be honest with them. At that point, they were four and two so pretty extreme for them to hear that daddy has cancer. They don’t know what that means so to them, that’s their new norm – Dad going to appointments and whatnot.

We’ve been honest, open, and talk to them. We’ve also shared experiences where there’s the dark side of cancer, but there [are] so many good things that come from sharing your story and putting yourself out there where other people rally around you within what we call our village. Feeling the love from that is pretty special.

Being able to go out and advocate, that’s what I want my girls to see and learn from because I think that’s really important and that will help shape them in life.

I thought [my] quality of life was going to be very poor and I thought the outlook was very poor. But the further we get through this journey, the outlook continues to get pushed out. The further we get, the further that outlook is going to exist.

Is this where I thought I would be? No. I thought [the] treatment was going to be different. But continuing to advocate for us, myself, [and] my family has always been my number one goal. Keeping things as normal as possible for my kids [and] being able to grow from these experiences was very important to us early on.

Learn from other patients about how to talk to kids about cancer »

Being involved in the children’s lives

A lot of bad things come through the pandemic but one of the good things is I get to spend more time with my kids.

Being able to drop Georgia off at school every morning, taking Frankie with me, coming home, putting Frankie on the bus, and then going and picking Georgia up at the end of the day — I can’t describe how important that is for me just to have that interaction and talk to her. When I pick up Georgia, I just talk to her about her day and see what made her happy and what made her upset that day, whatever it was. Just [having] that positive interaction with her is pretty special.

I coach both their soccer teams. And I think, selfishly, with my knowledge and experience with soccer, being able to coach and share that interaction with them is pretty special for me as well.

Being a dad is something that’s very special for me so I don’t think I took it for granted. I think it just has more meaning now being able to do those things.


Dan W. and wife
Thank you for sharing your story, Dan!

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Non-Small Cell Lung Cancer Stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

The White Ribbon Project


Dr. Michael Gieske



Background: Doctor fighting for early lung cancer screening story Focus: Encouraging more screening for lung cancer

Heidi Nafman Onda



Background: Diagnosed with stage 3 lung cancer, started The White Ribbon Project to push awareness of anyone with lungs can get lung cancer
Focus: Encouraging lung cancer story sharing, inclusion of everyone in the community

Dave Bjork
Background: Underwent stage 1 lung cancer surgery, in remission for decades, hosts own cancer researcher podcast
Focus: Encouraging lung cancer story sharing, passionate advocate for early screening and biomarker testing

Anne LaPorte



Background: Spent 35 years as nurse, then caregiver to father & daughter both diagnosed with cancer, before diagnosed with stage 4 lung cancer, herself (EGFR+)
Focus: Encouraging patient and caregiver advocacy, biomarker testing for more treatment options, early detection

Bonnie Ulrich



Background: Focused on family and being the "fun grandma," 3x lung cancer survivor with a smoking history
Focus: Building empathy for all patients, regardless of smoking history, and encouraging early detection for everyone to save lives

Rhonda & Jeff Meckstroth



Background: Jeff was diagnosed with stage 4 lung cancer and given months to live, but his wife, Rhonda, fought for a specialist that led to biomarker testing and better treatment options
Focus: Education of biomarker testing for driver mutations, patient and caregiver self-advocacy

Pierre Onda



Background: Primary care physician whose wife, Heidi, diagnosed with stage 3A lung cancer. Built first white ribbon for The White Ribbon Project.
Focus: Building empathy for all patients, regardless of smoking history.

Chris Draft



Background: Chris' wife Keasha passed away from stage 4 lung cancer one month after they married. He's been a passionate lung cancer advocate ever since.
Focus: Leading with love, making connections to grow lung cancer community, NFL liaison

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Categories
Cancers Keytruda (pembrolizumab) Lung Cancer Non-Small Cell Lung Cancer SBRT Xalkori (crizotinib)

Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

Amy’s Stage 4 Squamous Cell Carcinoma Lung Cancer with MET Amplification Story

Amy was diagnosed with stage 4 non-small cell squamous lung cancer. She shares the importance of finding the right doctor, her experience with hyperprogression, and switching regimens mid-treatment.

Amy G. timeline
  • Name: Amy G.
  • Diagnosis:
    • Non-small cell squamous lung cancer
    • MET amplification
  • Staging: Stage 4
  • Initial Symptoms: Lump in the neck, felt run down
  • Treatment:
    • Keytruda
    • Stereotactic Body Radiation Therapy (SBRT)
    • Cryoablation
    • Crizotinib
Amy G.

After [telling] my story and [hearing] everybody else’s stories, my big driving force was helping others because I remember what it felt like to be diagnosed.


Table Of Contents
  1. Video
  2. Pre-Diagnosis
  3. Testing
  4. Diagnosis
  5. Finding the right doctor
  6. Treatment
  7. When did you learn about the MET amplification?
  8. What are bone mets (metastasis)?
  9. Process of radiation therapy
  10. Changing the course of treatment
  11. Biomarker testing
  12. Targeted therapy
  13. Responding to the treatment
  14. Follow-up plan
  15. Living life after a cancer diagnosis

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Video

Amy G. dogsitting

Pre-Diagnosis

Tell us a little about yourself

I grew up in the Philadelphia-Delaware-New Jersey area. For most of my life, I actually worked in oil refineries. I was pretty much everything — secretary right up to machinist.

I really enjoy riding my bike. My current job now is walking dogs and housesitting for people… Believe it or not, that’s a really lucrative business.

What were your first symptoms?

Back in November of 2018, I had a flu shot and [it was] no big deal. I’ve never had a problem with a flu shot before.

In two weeks, a lump had come up on my neck in a strange spot. I knew it was a lymph node. I just assumed that it was from the flu shot. Didn’t think it was anything more than that.

I felt a little run down, but nothing big. For about a month, it had stayed there, so I had decided I’d better go call my primary care doctor.

For some reason, I just knew. I knew it was lung cancer. I just felt it. All I could hope is that it was an earlier stage.

What did the primary care doctor say?

She originally took a blood test just to see if there was anything that would show up… The blood test only showed a small increase in my calcium; didn’t think much of it.

She decided that I needed to get a CAT scan done on my lymph node. During that time, [the scan] had caught the top of my lung, my right lung, and had shown that there was a spot there.

Testing

What’s going through your mind during the tests?

I was incredibly nervous. For some reason, I just knew. I knew it was lung cancer. I just felt it.

I had no other issues. I had always known that lung cancer doesn’t really show any symptoms until it’s almost too late.

All I could hope is that it was an earlier stage.

What were the next steps?

The next step after that was I had to have a biopsy. I had a CT-guided biopsy of my lymph node, which at that point showed that it was lung cancer, squamous lung cancer. We didn’t have it staged at this point.

After that, they sent me for a PET scan, which showed that I had it in other areas.

All I wanted to do was figure out a plan to get it going.

Dealing with the wait for results (“scanxiety”)

I’ve been kind of lucky. My doctors have had a really fast turnaround. The CT-guided biopsy took maybe 20 minutes at the most. It was awkward. I was worried.

I had results within about 5 hours. But during that time, I still knew that it was cancer.

All I wanted to do was figure out a plan to get it going.

Diagnosis

Getting the diagnosis

It actually was on my birthday in December of 2018. I was driving somewhere and my doctor had called me and said, “We have your results.” And she said, “Are you with someone or are you at home?” Right there, I [knew].

My life has been so good up to this point. All of a sudden, just one little thing turned out to be pretty major.

Amy G. and husband

I said, “Since you’ve kind of let it off that way,” I said, “Just tell me now, I’m at a stoplight.” At that point, she had told me I had stage 4 non-small cell squamous lung cancer.

I had turned around and called my husband because he was at work. I’m in tears because at this point, “Oh, now it’s real. It’s really real.”

In my mind, I’m thinking, “My life has been so good up to this point. I have everything. I have my husband. I have a house. I have a dog. Everything is going great.”

All of a sudden, just one little thing turned out to be pretty major.

How did you break the news to your family?

I just told [my husband] outright on the phone. I said, “I have lung cancer.” The next thing I know, he hung up and came home. He couldn’t handle it as much as I couldn’t handle it.

I knew I had to tell my parents. My parents were the second group of people I had to tell. I didn’t want to tell my mom first.

My dad has gone through so many medical issues that I figured he’d be easier to talk to about it. I called him up on the phone. We talked for a good half hour about it. I didn’t have plans on what I’m going to be doing but he just kept saying, “It’s going to be okay.”

At this point, ‘Oh, now it’s real. It’s really real.’

Getting a second opinion

It basically was, “We have an oncologist that you can go to to discuss this.” I went to this oncologist and, funny enough, I didn’t like his bedside manner, so I decided to get a second opinion.

The second opinion basically was to get a new oncologist. I ended up going all the way to a new medical group. It’s kind of a community, but more midland. I ended up going to a pretty old university teaching hospital afterward.

I found a better oncologist who again told me the same thing he did. There was no change.

Finding the right doctor

You definitely have to have someone who not just treats you as a patient, but more can be a friend, I want to say? Somebody you can tell everything to because you’re going to have to throughout your cancer journey. You have to definitely have a doctor that you jive with.

You want to be able to ask questions. With the first oncologist, I didn’t feel like I could ask questions. It was more like, “This is what you’re going to do and you’re going to like it.” And I didn’t really want that.

[I went to the] University of Penn [and saw] a hematologist with a specialty [in] lung cancer. He’s not specifically for lung cancer, but his specialty is lung cancer.

Open lines of communication

They make it so easy to get ahold of them. It can be at 3:00 in the morning and they’ll still answer you.

[My doctor, Dr. John Kosteva,] texts me and I can text him, [but] not very often. We also do emails and we have our patient portal where it goes directly to them immediately.

Importance of access to information and knowledge

You definitely have to self-advocate. I know there [are] smaller cancer centers out there in the world where you’re not close to a university hospital conglomerate. What I would say is do take the time to go to one, even if you have to travel, but also bring the information back to your smaller cancer center so that they know that that can be done.

Treatment

Treatment options

The first oncologist had basically told me, “We’re going to do Keytruda immunotherapy. That’s what we’re going to do and we’re going to start next week.” That was basically it, which I liked. I thought, “Oh, that’s nice.”

His personality didn’t work for me. It’s almost like he had seen so many people with cancer [that] it was more of a dollar thing than it was a feeling thing.

At this time, we did not know that it was MET amplification. At this point, we only knew that it was stage 4 non-small cell squamous. He said, “The gold standard is Keytruda. Just Keytruda, nothing else. However, there is a clinical trial,” so I had to make the choice of whether I wanted to do Keytruda or the clinical trial.

How did you feel about possibly joining a clinical trial?

My fear was being new to the cancer world. I had worried [about the] clinical trial being new and not really much known about it. Whereas Keytruda had some data behind it, so I knew the side effects.

She had explained to me the better choice would be to go with what’s already known, to try that out first, and that there’s always a clinical trial further down the line.

You’ll never know whether a drug works or not unless you try it. I figured at that point, that right there was my biggest thing, was you’re not going to know how it works until you try it.

My doctor had handed me the paperwork: one for Keytruda [and] one for the clinical trial. The clinical trial was actually a lot thicker than the Keytruda one.

The side effects that were for Keytruda were your normal digestive issues, rashes… [there were] some funny ones in there.

As it turned out, I ended up having hyperprogression, which is also a side effect [that] had happened to me.

Efficacy of the Keytruda treatment

I had heard about [Keytruda] because six months before, they had the ads on TV. It kind of pushed my thought that, “Wow, these people are doing really good. That’s going to be me. It just has to be me.”

The way they explain it is that a lot of people do very well on Keytruda. I don’t remember the same exact numbers, but it was high. It was high enough for me to say definitely. Try it for that.

Video
Amy G. 1st Keytruda infusion
Describe the Keytruda regimen

Keytruda was done by infusion. Every month, I would go into the cancer center and they would just infuse me with Keytruda. It took half an hour. It wasn’t long at all.

Right after the Keytruda, I would get a shot of Xgeva, which is a bone strengthener because, at this point, we had found out that I was starting to get bone mets so he didn’t want me to break any bones. The Xgeva was important as well.

What did you have to do before the Keytruda infusions?

Usually what they would do is they would do the labs to make sure that your liver and your kidney and everything is working like [they’re] supposed to [work]. Then I would see my doctor and after that, I would go to have my infusion done.

When did you start to feel side effects?

The first time I had the first infusion, I had a panic attack when I got home. I’m kind of funny when it comes to drugs [where] you don’t know what to expect, so I tend to worry about it and it caused my own side effects.

I had a panic attack the first time and then about three days afterward is when the GI problems would start. The rashes started about a month afterward.

What helped you manage the GI problems?

When I first started having the GI problems, I had texted [my doctor] and they have a nurse navigator there who pretty much will answer all the questions. They prescribed me several different types of nausea meds [as well as] several different diarrhea medications along with anything I could get off the counter. Basically, they would throw everything at it and use what worked.

The nausea medication worked fairly well, but I noticed that I also had a funny taste in my mouth. I ended up going and getting something called Tummydrops, which are peppermint hard candies, and [they] worked very well to get rid of the nausea.

It was funny because my mom had come up from Florida, so she was trying to take care of me. She would always want to feed me and I wanted nothing to do with eating anything. I’ll take a popsicle and that’s it.

I had this sugar rush for a while because all I could eat was ice cream popsicles. That’s the only thing my stomach could handle.

[That lasted] the whole time I was on Keytruda.

Describe the rashes

I had a rash on my chest and a little bit on my legs. They itched real bad. I ended up using Aquaphor, which worked well. I also had steroids, in case I needed to take that. I never really did because it never got that bad.

They would break open. Almost blistery type. [It was] more of a nuisance.

It never went away. It always stayed there until I stopped Keytruda. Once I stopped that, it went away.

Severe fatigue

[There was also] severe fatigue. But I couldn’t figure out if that was from the drug or from me not eating correctly. I wasn’t sure what it was.

My doctors were on top of everything. All the medication they thought I might have to have was already ready for me.

Other side effects

Another side effect I had — that I honestly don’t know if it was because of my age — it seemed that Keytruda stopped my period. I now had a weakened urinary tract, so I would pee. I would always have to wear diapers just so I didn’t do that.

The only other side effect I had, which was helped by something called Silvadene, was I did get burned. I did have [burnt areas] in my groin area. But the doctor previously had prescribed me Silvadene because they knew that might happen.

The good thing about my doctors is they were on top of everything. All the medication they thought I might have to have was already ready for me.

When did you learn about the MET amplification?

That happened on my last infusion of Keytruda. The doctor had decided to take some blood to do the biomarker testing to see if I had any.

The strange thing, he had told me, is that there usually [aren’t] a lot of people with biomarkers that have squamous lung cancer. I didn’t think anything was going to come back. It took a couple of weeks to get it back.

Back then, I think it was a 6- to 8-week wait till you found out. And that’s when I found out that I had MET amplification and I couldn’t have been happier.

What are bone mets (metastasis)?

[Bone mets] basically means the cancer is in your bones. It’s eating it. It’s the best way to explain it. They can break very [easily].

[I had] extreme pain. No amount of opioids or anything could help that pain. We tried. Nothing worked. The opioids did help to let me sleep more so I could avoid the pain sleeping but you still had that pain constant.

It is [really tough], especially where I had them. I had them in my femur. I started off with a cane, then I went to a walker, and then I ended up in a wheelchair. It was bad [for a] period of about a month and a half.

Side effects of Xgeva

Not that I noticed. The only thing was a pain in your arm… and it was pretty bad. It wasn’t your normal [when you’re given] a shot [and] it hurts. No, it was bad in the arm. But other than that, no side effects that I could tell.

If you have pain and you’re a cancer patient, get the opioids.

Opioids for cancer pain

On top of that, I was taking the opioids for my own metastasis. I was taking something called Xtampza, which is a long-acting oxycodone. I was taking oxycodone for breakthrough and I was also taking Ativan to help. There was a lot.

I had asked my doctor, especially about the opioids. He said in most cases, a lot of cases, cancer patients, especially stage 4, do not get addicted to opioids.

If you have pain and you’re a cancer patient, get the opioids. Don’t be worried about getting addicted. I never did and I was taking them 24 hours a day. I had no issue.

As for taking any other drug, it kind of comes with cancer. You have to try it and just know that there are doctors and medications that can help you get over that hump.

Video

Process of radiation therapy

The radiation therapy was about a month.

It was during the time I was on Keytruda, about [midpoint]. At the time, I had started getting a met in my femur. We didn’t know how bad it was, but the radiation was done on my hips and my femur at that time.

It was an easy process if you want to say. They build a mold around your hips so that you won’t move. There was no pain associated with the actual radiation itself [but] because of the bone met in my femur, the pain was incredible but had nothing to do with radiation.

[The radiation session] was every three days. [Each session lasted] about half an hour. It took me more time to put on a gown because I could hardly move. I was in a wheelchair. I couldn’t take my clothes off. My mom had to help me.

My doctor decided that Keytruda wasn’t working. We have to try something else.

Changing the course of treatment

What drove the decision to take you off Keytruda?

I was on it for three months and the catalyst was my third-month PET scan, which showed I had it everywhere. Besides my lymph nodes, I had it in my shoulder, I had it in my adrenal glands, my ovaries, my ribs, my fingers, my hips, my femurs, and one foot.

At that point, he decided that Keytruda wasn’t working. We have to try something else.

Dealing with the news emotionally and mentally

It was hard. Just based on how I felt physically, I thought that April of 2019 was my last day or last month on Earth. I felt so bad.

When the doctor told me that, I thought, “Well, that’s it. I might as well get everything in order. Do what I want to.”

Just tell me how long I have. That’s all you thought about. Constantly, 24 hours a day.

I had slipped into a severe depression. I had asked my primary care doctor to put me on antidepressants.

In the meantime, I was still on Ativan because that helped with my anxiety. They switched that over to something called BuSpar, which helps my anxiety as well.

It was not only physically did I think April was my last month. Mentally, I wanted it to be my last month. I was not only just in that amount of pain, it was the whole, “How long do I have?” Tell me that. Just tell me how long I have. That’s all you thought about. Constantly, 24 hours a day.

Amy G. tunnel

The antidepressants definitely helped to pick me back up and make me more hopeful.

I couldn’t sleep, even though I was forced to sleep. You didn’t really sleep well. There was no relaxing. I would go to the grocery store and say, “What’s the point of doing this? Why, why, why? There’s no point.” Even everyday things just seemed pointless.

The antidepressants definitely helped to pick me back up and make me more hopeful.

Was there anything else that helped with the depression?

The biggest thing that helped was Facebook. I found a bunch of lung cancer groups and there were people that had been through it. Same thing as I’ve been going through.

Over time, after I told my story and heard everybody else’s stories, my big driving force was helping others because I remember what it felt like to be diagnosed. To put it out there, to help other people get through that, and know that they have a chance really, really made my life more worthwhile.

I did nothing but sleep all day. Everything hurt.

Biomarker testing

How did you deal with the scanxiety?

I grew up with a mother who always told me that you can’t worry about things [where] you don’t know is going wrong. It’s only going to hurt you more than anything. I’ve always tried to live by that.

I don’t really have anxiety but waiting for the biomarkers was a little testing because, at this point, I had lost so much weight. I was down 40 pounds.

I did nothing but sleep all day. Everything hurt. I had a rash covering my chest, so I really needed to get off Keytruda.

Getting the biomarker results from the doctor

[My doctor] said, “It’s rare that squamous has a biomarker, but you have it. And the good news is that there is a drug that works for it.” I was so excited and I’m like, “Oh okay, how long do I have to sit in a chair?” He’s like, “No, it’s a pill. You take a pill, a pill twice a day,” and I’m like, “Oh, this is great!”

Then I said, “Okay, well, what’s the side effects?” He started explaining to me and I’m like, “All right, they’re not that bad. It seems like the Keytruda ones were worse.” I thought, “All right, I’ll try it.”

[The] fact that it’s a pill now just thrilled me to death because now I didn’t have to travel back and forth and worry about all that. I could take it at home. Best thing ever.

Targeted therapy

Difference in quality of life with the pill

When you tell people about it, they’re like, “That’s not possible.” Yeah, it is. Yeah, I take a pill. People that are new to lung cancer don’t know that there are pills that you can take to help keep it at bay.

Importance of biomarker testing

[Ask those questions], absolutely. I’m still trying to learn at what stage they will do biomarker testing because I think they don’t really want to do it on the stage one, stage two. Three and four, more than likely they will do it.

I’m hoping that they start doing that earlier because it makes more sense. But that’s out of my hands at this point.

Side effects of Crizotinib

The first week, I was put on 500 mg — one pill in the morning and one pill in the evening. I started having very bad GI issues again and I’m thinking, “Oh, here we go.”

My doctor got the smart idea. “Let’s cut you in half.” I said, “Okay,” so I only take one pill a day.

The only side effect I had, and I don’t know how to explain this, is if I went from dark to light, I would have like a trail. I could see the door going sideways for a little more than it should. I don’t know how to explain that. It was strange but I thought, “Oh, this is all I have to deal with. I can do this.” It only happens sometimes.

It does cause visual disturbances. They don’t really explain that so much. You could lose your eyesight, which I didn’t have that problem with, so I just had those trails.

It lasted for about a year.

[I told my doctor] and he said it was normal for Xalkori or Crizotinib. If it got worse or it became where I was starting to lose my eyesight, then we would have had to do something different.

I did [check in with an optometrist] because I had to get my eyes checked anyway. In the meantime, I told them about trails and that it was probably a side effect of my drug. They didn’t see anything in my eyes to say, “Okay, you’re going to lose your eyesight.” There was nothing there.

GI issues with Crizotinib

It was mostly vomiting and some diarrhea, but it ended up being diarrhea for like a day. Then it was constipation for days on end.

I tried everything — and I mean everything — to get rid of the constipation, which was harder than stopping the diarrhea.

[I tried] everything in the store. I tried prunes. I tried prune juice. I used to have milk intolerance or lactose intolerance, so I would drink massive amounts of milk, eat a lot of ice cream, thinking that’ll loosen it up. No, nothing, did nothing at all.

If you’ve ever seen raccoons when they have their babies, they tend to rub their stomachs, lick their stomachs. I was actually pushing on my stomach to get it moving, which worked but not easily.

The GI issues went away immediately along with all the other things.

SBRT and cryoablation

SBRT is stereotactic body radiation, which means you get stronger radiation to a smaller spot instead of the whole area. I had five SBRT sessions on my lung to shrink [the tumor], but we wanted to kill it. Who knows? It might be dead. It may not.

As for the cryoablation, that is interesting. You go into a bit of a twilight. It’s like three needles or so. They go in and they freeze the tumor on your adrenal gland.

It only hurt for a second, but when I banged on the table, the nurse knew so she upped my twilight a little more. I couldn’t talk. For some reason, the words wouldn’t come out, so I just thought I’ll bang on the table. So if you ever do encounter that, bang on the table.

I had no pain afterwards. There was no recovery time or anything to it.

The SBRT was done five sessions one time so it was over five days. Then the cryoablation was done once and that was a one-shot deal.

Responding to the treatment

In April of 2019, I thought I was gone. The first week of Crizotinib, it was a little rough. The second week, all of a sudden, I felt like a new woman. I had no pain, no lumps anywhere, and just felt like I did before I had cancer. I knew, at that point, that the Crizotinib was starting to work.

It’s such a great feeling to know that it worked that fast and even my doctor really couldn’t believe it. It doesn’t seem possible. But the fact that I could feel it. It wasn’t just my brain saying, “Oh, you feel better because you’re taking [medication]…” like a placebo effect. It wasn’t that at all. I knew I physically felt better. I mentally felt better. I knew. It was a good drug.

I could walk again. I was out of the wheelchair. [I could] eat and drink [with] no problem.

I felt like a new woman. I had no pain, no lumps anywhere, and just felt like I did before I had cancer. I knew, at that point, that the Crizotinib was starting to work.

Amy G. giant wooden chair
Feeling somewhat like yourself again

You have the hope. You’re thinking, “Wow, I physically feel like that or mentally feel like that. I can live like this. I can go about my everyday life and enjoy things again.”

I just kept calling it the miracle drug. Even my family, my family called it. They’re like, “Ame, you were stuck.”

I could not walk up the stairs to take a shower, so I hadn’t taken a shower for almost six months. I didn’t sleep in my bed. I slept on the recliner downstairs and only slept lying on my back because [of] my femur.

Everything was broken at the time. [I] had all the issues. But it’s [a] miracle drug.

I keep going and asking [my doctor] if I’m boring… He said I’m the fastest turnaround he’s ever seen.

Follow-up plan

Follow up with PET scans

[I have a PET scan] once every four months now. Back then, it was once every three months for a PET scan and then once every six months for a brain scan, for an MRI.

The PET scan, after being on Crizotinib for three months, came back and the doctor was like, “Look at this!” He showed me on the screen and he said, “This is what you look like before. Look what you look like now! This is gone. This is gone.”

I was just thrilled. I was like, “Oh, I knew it.” I said, “The way I felt physically, I knew it had to have been doing something.”

I’m mad that [my body] didn’t let me know before I had it, so I knew ahead of time to push my doctor more about the symptoms. When I think back now, the pain in my shoulder a year before I got diagnosed probably was a symptom of lung cancer [but I] didn’t know it.

Right now, I believe [they’ll be doing the brain MRI] indefinitely. The PET scans are now [every] four months. I did go up once and that’s indefinitely as well.

I’m stable. It hasn’t grown and that’s all I want to know.

Stable but not yet NED (no evidence of disease)

At this point, I still have a light up in my lung and a light up on my adrenal gland. But again, the doctor said that could be dead tissue or the radiation may still be working and we just don’t know. I’m stable. It hasn’t grown and that’s all I want to know.

I continue on Crizotinib until either it stops working or becomes toxic. Right now, I’m stable and I’m happy to say that’s what I am and I hope it continues to work. We’re on three years of stable, so that’s a great thing.

The Facebook page [of lung cancer groups], you tend to get attached to some people and you think, “Oh, they were diagnosed the same time I was.” Then you realize that they passed and you just don’t understand how they did when they had the same exact cancer as you. So to think that I’m alive is wonderful but sad in that effect.

I know [my doctor] talks to his tumor board regarding me. I don’t know how often. I’m assuming every time I have a PET scan, he’s like, “Well, she’s still boring.” We’re hoping — knocking on wood now.

Crizotinib’s been around for a long time. That was one of the first targeted therapies they had come around with, I believe it was maybe 2013 it came out. Could be wrong on that date, but it’s still been around for a very long time. But the squamous with a MET amplification is a shocker.

Never give up and always hold on to that hope.

Amy G. butterfly

Living life after a cancer diagnosis

You definitely have to enjoy every day; actually, every second. Even the bad stuff, you still need to enjoy it because it may not be there for long.
Also try not to be nervous about your scans. It’s not going to help anything at all and may actually make things worse. If you’re really, really upset and your anxiety is through the roof, definitely call your primary care doctor to have help with that.

Never give up and always hold on to that hope. If you don’t like an answer a doctor gives you, try another one. Get a second opinion. Get a third opinion. You have time. You just have to find the right doctor.

Just hang on to hope.


Amy G.
Thank you for sharing your story, Amy!

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Non-Small Cell Lung Cancer Stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)
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Categories
ALK Cancers Lung Cancer Non-Small Cell Lung Cancer

Shyreece’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Shyreece’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Shyreece

Shyreece Pompey dedicated her life to teaching kids. Outside of her family, it was her whole world. Then came the shock of her life: a stage 4 lung cancer diagnosis for this mother and grandmother with no history of smoking.

8 years later, Shyreece is thriving as a different kind of teacher. She is lifting others through her own experience and lessons learned since her diagnosis in 2014, like the importance of patients advocating for themselves, ensuring they get comprehensive biomarker testing that could shift their entire treatment path, the importance of clinical trials, and understanding her experience as a Black cancer patient.

Thank you for sharing your story, Shyreece!

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Video (Part 1)

Introduction: Tell Us About Yourself

One of the things that I like to talk about is that I loved teaching before I was diagnosed with stage 4 cancer. I loved teaching so much that it became a part of me.

Now, even after diagnosis, I still teach. The art of teaching, the philosophy of teaching, and everything about teaching is what I love. I did that for probably about 17 years, professionally and even in other aspects in the community.

If there was a teacher needed for something or a class to be taught, I taught. I’m a bona fide teacher at heart, and I think that part of me is a part of me that can never go away. I don’t want to get too deep, but it will always be a part of me. 

That is my legacy, just everything that I’ve had to overcome. Teaching is it for me. The people that I come across today, I still teach, but in very, very different ways. In ways that allow them to be their best person.

I was scared, and I said, ‘Something’s not quite right.’ Then I heard a wheezing sound that came out of my body. I said, ‘That’s something that I’m not controlling, and it’s coming out of me. What is that?’ 

Diagnosis

What were the first symptoms?

Great question, and it’s going to continue to flow with the first question you asked me: what I love to do is teach. Well, I was teaching that day, preparing the students for one of the most important tests ever in the state. 

As I was teaching them, I took a brain break with them. We’re dancing; we’re doing the wobble. Then all of a sudden, I got so heavy. My arms got heavy, and I got tired and fatigued. I had to tell the kids, “Y’all got to sit down. I don’t know what’s going on, but y’all sit down. Get out your book and read.” 

I needed to sit down for a minute, and there was a throb. There was like a skip, a beat in my chest, and it had to throb and calm down. I said, “I don’t know what that was, but it really scared me.”

I was scared, and I said, “Something’s not quite right.” Then I heard a wheezing sound that came out of my body. I said, “That’s something that I’m not controlling, and it’s coming out of me. What is that?” 

When was the first time you sought medical care for these symptoms?

Long story short, probably about a week later after that, I ended up in the ER room. The ER doctor said, “You are not going anywhere. Matter of fact, we’ve got a room ready for you, and I don’t even trust your husband to take you to the hospital. What we’re going to do is put you in an ambulance, Shyreece, and take you to another location.”

That was the beginning of my journey to being diagnosed with stage 4 lung cancer.

When did you first realize this might be cancer?

The first inkling that I knew that I was dealing with cancer was when all the tests that were run pointed to absolutely nothing that was on the surface. It wasn’t pneumonia. 

I was like, “Come on, everyone. I have to get back to work. Give me some cough syrup. Give me your cough syrup so I can get back to work.” No cough syrup ever came. 

They hooked me up to the EKG to see what was going on with my heart. Perfectly fine. Nothing was coming up. I’m like, “Okay, I’m good. I’m good.” I’m getting excited. I’m good. But then they said, “We have to go inside. We’re going to do a VATS (video-assisted thoracic) surgery on you to drain the liquid that is crushing your lung.”

Now things are getting serious. I’m like, “This sounds deep.” “We’re going to scrape some tissue, and we’re going to send it off.” That’s when I’m like, “Whoa boy, this doesn’t sound good because you’re not finding something on these preliminary tests, and yet something is still gravely wrong.” 

“Now you need biopsy tissue.” That’s when it was like, “Oh boy.” That’s when I knew that something deeper may come out of this. 

I’m like, ‘Cancer? What is cancer? Give me whatever cancer needs to be dealt with.  I’m good. Let’s go.’

The test results

The test did come back that it was a malignant cancer, including the biomarker. The FISH (fluorescence in situ hybridization) test indicated that I had an ALK-positive mutation. That was the beginning of one of the most frightening journeys. 

Being the kind of person that I was, I don’t know why that didn’t faze me like that. I was so gung ho about doing something else. I wanted to press through it. I’m like, “Cancer? What is cancer? Give me whatever cancer needs to be dealt with.  I’m good. Let’s go.”

Boy, how I wish it was that simple.

Describe getting the lung cancer diagnosis

It took 2 weeks to get an actual diagnosis. All of those tests, and this is during hospitalization. I always go back to the fact that this is a hospitalization-type of moment because my lungs were crushing. That was an indicator that something gravely, seriously was wrong, and it was more than just a cough. It was more than just heaviness. 

Then 2 weeks after hospitalization, on the last day, the hospitalist came to my bedside and said, “I’m so sorry. It’s cancer, and it’s stage 4.” 

That’s when I had the first cry. I cried on the phone with my cousin, who’s a nurse, and she was living in another state. When I posted on social media that I had to do a VATS (video-assisted thoracic surgery), she called me immediately and knew that.

She said, “Wait a minute. What’s going on?” Then I shared with her right then that they found cancer and it’s malignant. We both cried.

Guidance to other people on processing the diagnosis

The type of person that you are before cancer is important to help you endure that moment. Part of me — yes, I cried and broke down — became very vulnerable, and every conversation that I have ever known that I had with… this is where I bring in the God component. It happens in almost every traumatic moment. It’s like, “Oh, God. I thought this about my life. What is happening?”

In that moment, you want to find reasoning that is spiritual or medical. Every kind of component of philosophy comes into your mind and heart right then. Now I’m reaching for character, right? I’m reaching for moral. I’m reaching for something that can ground me through this moment as to what is being shared with me and who’s there for me. 

Who can I call? The doctors are here delivering information, but they are not the ones I want to talk to right now. Who can I call? What could I reach for? In that moment, I stayed there for a moment, but then something on the inside, that part of me is like, “Okay, fine. Fine. If this is what it is, then what’s next? What’s the solution, somebody? I’m like the lady in ‘Wiz’ now. Don’t bring me any more bad news!”

Okay, so if it’s chemo treatment, that’s what they brought to me. Chemotherapy treatment was next. I said, “I’m not waiting. Bring it to me now. Hook it up in the machine. How hard can this be? Let’s do this.” 

Now, looking in hindsight, I was like Superwoman going quickly down by the head, and I didn’t know it. Intravenous chemotherapy was hard. They loaded me up, and I was like, “Boom, took it.”

Eventually, I started getting weaker and weaker, and then I really had to reevaluate some things, even the D-word. Not diagnosis. If I’m going to die, then let me start preparing my funeral.

What was your reaction to hearing that it was lung cancer?

Just that I don’t have a history of smoking. Where did this come from? I even thought that it could have possibly come from all the smokers that ever came around me when I was growing up. I blamed them.

I said, “This is smoking-related.” But research and as I continue to grow and learn, the lung cancer and the rarity of it and the complexity of it, it’s absolutely not at all smoking-related. 

Within that, it had given me an opportunity to heal on some very mental, spiritual issues that I’ve never dealt with in my adulthood that stemmed from my childhood. I needed that to happen because I needed to know the best treatment plan for me. If it was going to work, I needed to be centered and whole. I needed to be clear. 

I need you to know me. I need you to hear what I’m saying to you from me and then going to teach about these different biomarkers.

Breaking the lung cancer stigma 

First of all, I really had some of the most challenging statements to me, and that was one: “When’d you smoke? I didn’t know you smoked.” 

That stigma alone was something to deal with. Based on my character, I tried to find the most Christian way to respond without getting really, really upset and seeing my other side.

Then again, it became a teaching moment. I said, “Great, I get a chance to teach about my type of cancer and my type of mutation. It’s not smoking related.” I start there.

Then I also let them know that I’ve never smoked. Yes, I grew up around a smoking environment, but that is not the cause of this cancer. I had to go into a teachable moment and also let them know that, no, I do not look down on anyone who smokes, but I know that that’s not my story.

For you to understand that smokers are just not the only ones who can get lung cancer, I need you to know me. I need you to hear what I’m saying to you from me and then going to teach about these different biomarkers. 

That’s one of the major approaches, that I use it as a teaching moment now. That’s what I was trying to say before. My teaching skills and degree and everything about it and my talent for it never go away. I just use it in a different form. 

I don’t know why I got this lung cancer. I reserve the right and the stance to say that. I am shocked that a non-smoker can get this. It’s not saying that I don’t love you or I’m judging someone if they did smoke. No, all I’m saying is that I want to make sense of this. Make this make sense.

Treatment Decision-Making & Self-Advocacy

Video (Part 2)
Describe the first treatment conversation with your first oncologist

I’m so glad that we get an opportunity to go there, because the first oncologist was appointed to me as one of the 5 doctors who came to my bedside while I was hospitalized initially to figure out what was going on with my lungs. Why they were crashing, and where is this fluid coming from? 

1,700 mL units had to be drained from my right lung. They left half of the liquid in there, reserved for the VATS (video-assisted thoracic) surgery, and they got some more of it out that way.

There was the oncologist that was represented. I had the surgeon. I had the oncologist that was appointed nearby, a local one that came in. I had the hospitalist and a couple of others, maybe a cardio doctor that came in, so that now we can rule out some things. 

The lucky one that stayed was the oncologist and the hospitalist. The oncologist there was sharing with me because now we’re asking her about prognosis. This is critical. You’re at my bedside, and you’re sharing some things with me. 

First, it was like, you know, you’re talking that way. In another breath, you’re like, “Oh, you’ve got about 15 months to live.” 

I’m like, “Whoa, that changes the whole gamut of things. Well, what can we do about this?” She said, “I can start you on…” They call it the “salad mix.” I’m not going to even try to pronounce all the medical names that go with that (carboplatin, pemetrexed, bevacizumab).

Then I knew deep down. I said, ‘I think I need to go somewhere else.’

When you decided to get a second opinion?

Most folks in the community of survivorship or cancer patients, you know that there is a mixture of intravenous chemotherapy to try to stop and reverse the cancer in its place. I did that for about 3 cycles, 3 weeks with this local oncologist who knew absolutely nothing about the different biomarkers and how to treat these different mutations.

I know that for a fact because the different treatment plans she had me on were killing my cells. I was dying quicker, it seemed like. It was like, “Wow, this doesn’t look like it works, and I have to stand up for myself.” 

Plus, it was like a treatment that she was giving that — I’ll just say it because it’s my story — was the same treatment that she would give a smoker. There, I said it. Same treatment, stand in line.

Matter of fact, when I went there, there were people literally lighting up cigarettes waiting outside somewhere to get their treatment, and there were signs in the bathroom that said, “No smoking allowed.” I’m like, “Wow.”

Then here it’s like, “Okay, stand up. Your turn. Stand in line. Roll up your arm. Or do you have a port? Do you have a port? Okay, well, use your port. Put this in there.”

It was like, “Whoa, wait a minute. Wait a minute. Wait, stop, stop. Wait, can you tell me? Can you pinpoint to me where exactly is my cancer?”

I’m not going to say that doctor’s name because I don’t have her in the best light. I brought her a coloring sheet. I used one of her brochures in her clinic, and I took and drew the lung shape. I said, “Can you tell me which one of my cancers is in your brochure? What does mine look like?” She really, really didn’t have the best answer for me.

When I did that, here’s the big insult. She said to me, “Shyreece. You have monkeys in your head, and they’re speaking to you. You need to just stop listening to them and accept your diagnosis.”

Then I knew deep down. I said, “I think I need to go somewhere else.” I followed that hunch. I went to University of Michigan, where I learned that there are different mutations and that I have options.

I did not need to do right away the intense, hard, chemically-altering cell intravenous chemotherapy treatment that they had me on immediately. That came to a stop immediately.

Guidance to others on patient self-advocacy

Stephanie Chuang (The Patient Story): Even as an advocate, I feel like there are moments when you don’t want to be the “bad patient,” and you want to say, “Well, you know what? The doctor knows everything. They know what’s best. They’ve got all the medical training, so I should just listen.” And it’s hard. Can you help give people guidance here? What can motivate them to say, “No, I need to speak up for myself. I can and should speak up for myself”?

Here’s the teacher-type skill in me coming back out again. There’s a concept called Kagan strategies. It allows people to come together and interact in a way that you can move and get a goal done, accomplished, completed.

You help folks get together and have a camaraderie of spirit so that the end goal would be the best practice for that patient, project, individual, whatever we’re going for. 

When it comes to me, I know how to collaborate and get whoever is on my care team. That’s the homework that I have to do. It’s like, “Okay, this doctor specializes in this. This one is needed for side effects. This one is the neurosurgeon.”

I need to see how they all are [and] why they are on this team. First of all, that’s homework. Why are you on this team, Team Shyreece, Patient Shyreece?

When I know that and something that’s going on with me, I can say, “This may fall in these 2 categories, so let me get these 2 in a conversation.” I do it through my patient portal, or I’ll write down questions so that I can take it to my appointment and compare notes.

At the end of the day, the patient has to decide exactly which way you’re going to go to what’s been presented to you. If you are presented with options, I have to look at the data that I’ve been collecting and the anecdotes. Sorry if I’m using too many teacher-type behind-the-scene concepts, but that’s what I use now in order to make data-driven decisions.

Biomarker Testing & Working with Specialists

How did you get the second opinion?

Stephanie Chuang (The Patient Story): It’s an important message for people. Going back to this biomarker testing, I want to really dive into this because it had not been brought up at all in your first conversation, right? It was, “Skip to this harsh chemo, and that’s that.” You go to a second opinion. You get a second opinion. What did the doctor say there?

We’ll go back a little bit [to] while I was being hospitalized. Then, unbeknownst to my knowledge, the biomarker testing and all that had already been done. They took my specimen from the VATS (video-assisted thoracic) surgery and sent it because it’s a local hospital in a rural area.

They took my specimen, shipped it off, and sent it off to the nearest university, which was about 2.5 hours away. When they received it, they ran all the tests on it and sent the report back to the hospitalist.

The hospitalist knew to do that in the first place because he was from the University of Michigan. University of Michigan were the ones who’d done the biomarker testing. The hospitalist called in the local oncologist and said, “Okay, this is a cancer patient. Ball’s in your court.” 

That local hospital did not have access to the [report], or I don’t even know if they knew how to read all of the report. All they knew was [for] lung cancer, you stand in this line. Lung cancer goes to this line, when there’s 15 or 16 different aspects.

I’m speaking more intelligently now because I’m speaking in hindsight. But then, it’s like, “Oh, I don’t know.” I said, “Let me just go to University of Michigan and find out.” Yes, I had some options. 

Biomarker tests may lead to new treatment options

One of the options was through a targeted chemotherapy. The local oncologist knew nothing about it. The local doctors that I had knew nothing about it. It wasn’t even in their database.

That’s a whole horse of a different color. If I had enough time to spend the rest of my life advocating a thing, that would be why doesn’t the local, rural — that’s where most folks who are living just above poverty. I was a teacher with teacher salary; we have to go to those kind of doctors and clinics. It’s in our area. Why are they not knowledgeable of the different biomarkers? 

Working with a lung cancer specialist

Stephanie Chuang (The Patient Story): It’s incredible because it shifted your entire trajectory. It’s an important point for me, too, is understanding and why we do this at The Patient Story. We are trying to reach people who don’t have access to the big research academic centers, who already have people who work both in clinic and in research, know about all these things, and know all the latest developments. This information does need to get out to the millions of people in this country who go to rural, community cancer care centers.

I also do understand that there are a lot of general oncologists. They do their best, and they’re trying to keep up. What I will say is that’s why there are these partnerships, right? You can go to your local oncologist. But if you know to say, “Hey, I’d like for you to work with so-and-so who’s at University of Michigan or UCSF or Mayo Clinic,” wherever, you can have that partnership.  I think an important point here, too, is the right doctor is okay with that, right? There’s no ego there. There’s yes, I have my strengths, and I need you as a specialist.

Work together as a team. I don’t know why we’re territorial. I don’t know. Where does that come from? Because it doesn’t help a patient like me. It doesn’t help us.

We need you to collaborate and work together. I need the site, the palliative care doctors, the PCPs, whatever you want to call. You have a meeting every once in a while. 

In the education world, there are diagnoses that can help in a student’s life, but it doesn’t keep them there. We’re just saying that today you’re wrestling with ADHD. Today, you may need a 504 plan to help you with your behavioral needs.

Guess what? We have to have meetings. We bring in all the professionals, we bring in the teachers, we bring in their doctors, and we bring in their parents. Everybody sits around the table to develop that plan.

My goodness. To me, it’s just simple. How about my doc? I’ll just keep it personal because we’re talking about the patient’s story. Here’s Shyreece’s dream, and it might happen after I’m called home to glory. But I would sure love to see the day where the oncologist, the neurologist, the neurosurgeon, the radiologist, and everybody just have a meeting every once in a while. Maybe every year, once a year, or every 6 months.

I know you are busy. We thank you for all that you do, but please consider coming together just to have a patient review with everyone that’s involved. That’d be great. Thank you for your time.

How did treatment options change after the ALK-positive result?

Stephanie Chuang (The Patient Story): With the biomarker testing, it turns out that you were ALK positive. For people who are not familiar with biomarker testing, it’s also known as genomic testing or mutation testing. You’re trying to figure out if there is a driver mutation that’s targetable. That’s what you were saying about targeted therapy, right? ALK positive for you. That was the targetable mutation. 

[My oncologist] just said, “Here are some options. I said, “I’ll take door number 3.” When I picked it, which is the targeted chemotherapy, he said, “I have to run this by your insurance.” I’m like, “Oh, insurance, what?” Now, there’s another topic. 

They ran it by the insurance, went through that process, and waited for hours just to see if I can go and get the targeted therapy.

I’m so glad that University of Michigan had their pharmacy right there. We’re just talking about special deliveries because I’m thinking, “You can’t just send this prescription to Walgreens so I can go pick it up?” No, honey. We’re going to have to see if the insurance approves it, and if they don’t approve it, that would be a shot to me.

What if they didn’t approve it? I’m glad they did. But what if they didn’t approve it? It’s like, for me, now what? That door number 3 is not available to me. That’s a whole ‘nother conversation.

Let’s stick to [the fact] that it was approved. I had to wait and go get it and then for them to fill it. It’s through their pharmacy only. I would have never been able to get it anywhere else anyway. That’s why nobody else knew about it.

Targeted Therapy & Clinical Trial Experience

Video (Part 3)
The targeted therapy experience

I started taking [targeted therapy] in April. One month after diagnosis, I start a whole new world, and I can cry. The day was sunny. I’m sitting in the car with my husband. We leave University of Michigan to take this new elixir of knowledge in this bottle in the form of pills. I can’t even remember how many a day I had to take with crizotinib, the first one, and so I started taking them.

We had our lunch, and then not too much time went by until I felt different. I did feel the side effects of it a little bit, but some things started kind of clearing up a little bit in my throat area, where I was always challenged after surgery.

I started being a little bit more tolerable to what was going on with my body. I felt different. I said, “Wait a minute, something’s different.” I lived 3.5 years on it.

I maintained side effects, but I also knew when it stopped working. That’s a scary place to be also. That’s when I knew I woke up to another reality is that I can’t put all my hope into these targeted treatments. So now what? 

Experience in a clinical trial

Stephanie Chuang (The Patient Story): I think it’s good for patients and caregivers to have those expectations set. I also love that you’re talking about the need for constant research. This is why clinical trials are so important, because you’ve got these, like crizotinib, that were approved, and you just need them to be approved in time for you. 

But then at some point, you know that there’s resistance and the cancer sometimes finds a way around it. So what’s the next thing? That’s why these clinical trials are constantly being done. Do you have a message about that, the importance of clinical trials and that research, what it means to you?

I am all in for clinical trials and research. I participated in a clinical trial during a May 2015 through to July 2015. I remember like it was yesterday because that’s when I made the decision to come out into retirement.

I could not do the clinical trial at that time. It was very intense. It was like three times a week driving the University of Michigan, which was two and a half hours. Then there were complications, and understanding was this clinical trial that I was participating in. Would there be any help to me in regards to gas and transportation? That got confusing with the university and so we worked through that.

I wanted the world to see this process of this new strange lung cancer that’s rare. No one’s ever really heard of it before.

There’s a resolve that in this journey, it will require three components of you. Mind, body and spirit. You cannot afford to ignore any one of those components.

Importance of more diverse representation in clinical trials

Look at me, I don’t know if you noticed, but I’m Black. I was trying to figure out is there anybody else that looked like me that has this? 

Yes, I am all for clinical trials, and that’s another thing. I just like being transparent and I like being authentic and real. There are not a lot of African-Americans who participate in trials in the first place, but I did. I went on ahead and did it.

I didn’t like how it was working with my body. And so by July 2015, the physician assistant, I just love her to death, at University of Michigan. She looked at me in my eyes and she said, Shyreece, this is not the quality of life we want for you, and you don’t have to do this. So because I was having a bad time with it, so she pulled me off of that.

I participate in trials and I do support research where I can.

Stephanie Chuang (The Patient Story):  I think there are a couple of points there. One is clinical trials are, someone put it as tomorrow’s treatment today. Sometimes it can give you access to something that’s not yet on the market. And the other part is helping people for research.

What is your message overall to the patient, to the caregiver right now who’s watching this, who’s a little bit nervous, who knows, logically speaking, or rationally, I should speak up, but it’s a little bit hard to do in the moment.

You have to have a resolve. There’s a resolve that in this journey, it will require three components of you. Mind, body and spirit. You cannot afford to ignore any one of those components. They all have the same level of importance to your overall well-being, as well as how effective the treatment is going to work.

Everybody is different. That’s correct. But one thing remains a fact, and I wish that there was enough time to do scientific research on the survey that most cancer patients must complete prior to their return visit with their doctor.

The survey asks how are any one of these everyday circumstances under these categories, family, spiritual, financial, affecting you this week on the scale of one to 10?

And if your spiritual balance and inward being balance is off, that will affect the success of the treatment being prescribed to you. So keep that in mind on your journey – mind, body and soul. All three of those components are equally important as you journey in your cancer walk.

Shared treatment decision making between doctor and patient

Stephanie Chuang (The Patient Story):  When you think about the patient doctor relationship and the paradigm we’ve been living in, where it’s shifting, but it’s still slow, from doctor knows best, I will sit here and listen versus I need to be in charge of my own cancer care or my healthcare in general. What is that message to doctors, to patients about the need for more patient self advocacy, for more listening to patients?

First of all, I would like to take this opportunity as we’re winding up that section to thank the collaboration of all of the doctors, especially the ones that I’ve had at University of Michigan, as well as Stanford Health Care. I think that they are a phenomenal team. 

The minute that I walked into Stanford Health Care, they knew my back story. There’s a word on the street, back story, what’s your back story? Then they’ll say, well, I’m just living my back story right now. Well, Stanford, they knew my back story. I was shocked about that and they looked at it intently. They had a plan of where they would like to go. 

It was easy for me to trust in that. So there were some components that I was looking for in their approach. They say the first impression, it’s important. So they had a great first impression, which was, ‘Let us take a little time. We don’t need you to fill out the paperwork of a new patient today, Shyreece, just to know you. No, we went and did a little background work on you.’ So to know the patient is very important to me. 

Own your data.

If somebody is going to take the time to know you, then yes, that’s a good starting place to where we can enter into a healthy collaborative. Now I have to say collaborate still, because this is my temple. This is my temple. I am not a guinea pig. I’m not a lab rat. This is my temple and nobody walks in this temple but me.

So, yes, there are some parts of me that I have to bring to the table because I can’t expect them to know everything there is to know unless I tell them. There are some things that I have to share as well. So it’s going to take that collaboration.

Also, when you’re presented with options, that’s all they’re doing, is presenting you with options. At the end of the day, you have to make a decision.

So my advice is, look folks, study your own data when you’re presented with some options. The doctors may not know everything before your cancer diagnosis. They’re not gods. They’re your doctor, so have a participative approach to your care.

Own your data.

Diversity and Inclusion in Cancer Care

Video (Part 4)
Amplifying diversity in healthcare and research 

Stephanie Chuang (The Patient Story): We know that Black men and women with lung cancer are significantly less likely to get diagnosed in an early stage compared to their white peers. If you’re getting diagnosed later, the odds of survival are smaller, right? But there is a lot of human impact here that I want to unpack. What is your message in terms of what we all need to do better? Whether it’s clinical trial participation, whether it’s messaging to the Black community, what do we need to be doing?

It’s definitely not in the rural areas yet, it’s coming, but there are some African-American initiatives community movements where on the health front, they’re really going into communities and neighborhoods.

They’re setting up fairs and booths and handing out literature to where you can really be active in your health on all fronts, whether it’s lung cancer or breast cancer awareness, all of it.

Reaching faith-based communities

I do know that it’s not enough, though. It’s not. So much more to be done, but it’s a start. Within those communities, and I’m just going to be brutally real, it might have to creep into our faith-based communities because even I have to continue to combat this as a believer.

I do attend church, but I’ve also learned how to grow in this challenge of having cancer. I have the opportunity to see both sides as a cancer patient and as a participant in church activities. So the disconnect is that, and this has happened to me a lot. ‘Girl, just give it to God. Just pray.’

As if the God that I’m praying to is not going to answer through people. When that realization hit me, I was like, oh, He’s going to answer through people when He does, so people, how can we get ourselves in a position to actually do some really wonderful things? 

I think that that aha moment is going to come from let’s get out of being territorial first. We do have some owners of the information, ‘this is our information and it’s going to stay in our university.’

There’s that extreme, to just providing the information through flyers. You go to a church gathering and present, I don’t know, have a day of food and medicine. I don’t know. We can be creative, right? I hope.

If you give a man a fish, he’ll eat for the day. You teach a man to fish, he’ll eat tomorrow. But how about we show them where to fish?

Improving outreach to Black communities

Stephanie Chuang (The Patient Story):  We’re painting with broad strokes. Black people or African-American communities are not one monolithic thing, but generally speaking, there is a sense of distrust with some folks when it comes to institutions, to healthcare, to testing.

And of course, Tuskegee the experiment is a huge part of this because people from that era are telling their family members and passing that down, okay, you’ve got to watch yourself because we have to protect ourselves. 

There are these cultural nuances.  So you suggested let’s meet people where they are in the community. Is there anything else that we can do better so that we have more participation?

Oh, absolutely. First and foremost, with all due respect, the first thing outside of race, color, creed – I had to choose if I wanted to live or not. When I decided that I want to live, I started looking at everything through the lens of, okay, so what is the best approach? What is this? 

Let’s go back and let’s connect something real quick. The first oncologist who said, ‘You have monkeys in your head,’ I could have decided right then to take that as a total racial write off and just go all into some kind of march or whatever and raise a flag. But I chose not to because that energy would have taken away from the energy that I needed to live.

Because when you talk about monkeys and apes and stuff like that, oh, that can raise an alarm in the Black community in a minute. But for me, I needed to look at the bigger picture. I didn’t need to address her that way. Not at that moment. 

I need to live first. Let me find out how to live first. So now I’m reaching for the exchange. Can we get to a place where we can feel comfortable engaging in a conversation? 

We talked about the stigma of lung cancer being associated with smoking, then we need to remove the stigma that the reason why people are not getting diagnosed early or vice versa, is it all race related or is it because they really don’t know where to fish? 

If you give a man a fish, he’ll eat for the day. You teach a man to fish, he’ll eat tomorrow. But how about we show them where to fish? Where is the information at? I wanted to know, so I sought. I now teach people, not color first, gender first, and all this, but I teach you where to go to find information. Is that where the energy goes now? 

Democratizing access to treatment information – for everyone

That way, I can demystify the Tuskegee approach. I’m sorry that happened, it did. You’re right, but that’s not today. That’s not today. So I’ve got to stay present.

So what’s today? Today’s issue is just like we talked about once before, which is the information is not made available to everyone. And University of Michigan had knowledge about a targeted therapy that the local rural area that I lived in had no idea about. 

I don’t think all the way that that had anything to do with race, color, or creed, it had to do with the dissemination of pertinent information for just people who are not who are not in the university.

You can never give up hope.

Not now, not then, not ever.

Final message to others

I’ll start with the end and work backwards, which is hope. The hope is in knowing that there’s more to life than just your existence. The hope for me was I joined a lot of groups. I joined a lot of advocacy groups and the hope was always in just the research alone. We don’t know what’s coming out. So there’s that hope in the unknown. 

You can have fear or you can have hope. Then when you have hope, what is it in? No different than fear. What is your fear in? I can have fear of my scans. I have a scan coming up the end of April. Now I can have fear of the scans, or I can have hope that when the scans come out, that there is an answer, that there is a remedy. That there is something on the horizon.

When I had that hope at first, that hope didn’t kick in right away, it’s weird, even when I called myself a believer, but in a cancer diagnosis, you’re staring at something that people have died from. That’s a whole different walk because you’re planning your own funeral. 

But yet a glimpse of hope came, to know that the crizotinib that I was on didn’t even exist 10 years ago. I did pray and people were praying for me and I know that on a cancer journey, the people that love you, they go into prayer. Well the prayer is that, the hope is that yes, research is changing, and it’s creating opportunities to live longer.

I’ve been living eight years now. You can never give up hope. Not now, not then, not ever. So I get the hope to live longer, but I can’t just hope in the next pill. I need to have a place of peace. I need to have a disposition that even if the next pill doesn’t work for me, can I live a life of giving back because that gives me joy. 

I want the next person who’s diagnosed to know that not only can you have hope in the research, but you can have hope in a very divine essence of love. Love is an energy that I know that after the last pill doesn’t work for me, the quality of life that I was able to live because of the cancer research, it’s great. And I’m thankful. 

So resolve. Get your place to a resolve where you can enjoy the research and take advantage of it for the quality of life and give back. Give back to your family. Give back to your community. Give back to something.

More on Shyreece’s book

HOPE: It Will Not End with My Death is on Amazon.com. It’s basically my six-year lung cancer journey. The first six years in all of the ebbs and flow of it. 

It’s not just about the hospital, so it’s not a boring read to where it’s like she’s in the hospital today and then you’ve got to go get a test. It’s not like that. Anyone, even if you don’t have cancer, can read it and just follow me on this awesome journey.  I do call it awesome because there are so many other discoveries of me becoming. 



Thank you so much to Pfizer for its support of our patient program!
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Lung Cancer The White Ribbon Project

The White Ribbon Project | Rhonda and Jeff Meckstroth

The White Ribbon Project Stories

Rhonda & Jeff Meckstroth
The Love Story

Story 5 of The White Ribbon Project Stories

This love story started at a fire station in rural Ohio. It’s where Jeff and Rhonda Meckstroth both worked in 1990.

“Instantly I was like, oh my gosh, he is the most handsome thing I’ve ever seen in my life,” says Rhonda about her now long-time life partner and husband. “He’s six foot two. He is 200 pounds. He’s built like a wall and these big, huge muscles that are bulging outside of his firefighter uniform. So I’m just like standing there, like stuttering, I’m here for an interview!”

She got the job and they became colleagues and friends. They didn’t actually start dating for five years. When they did, they kept it a secret.

“I definitely didn’t want anyone to know because I thought I could possibly lose my job and I had a great job and a great income.”

Their relationship started off with a bang – literally – when Jeff invited Rhonda onto his 2-seater plane for their second date. The plane malfunctioned. Jeff had to crash land the thing.

“And we land, and it just so happened that my door popped open when we hit the ground, so I’m literally now hanging on by the seatbelt that Jeff just tightened. We come to a stop. He asked me, ‘Are you hurt?'” Rhonda recalls.

“Neither one of us are hurt. He undoes my seatbelt and it tells me that he smells gas, going to take off running. And we’re both running, going up towards this little older couple that own the farmhouse. And there’s all these sirens. They were the ones that heard and called 9-1-1. And so needless to say, we were on the news that night.”

Jeff adds, “When we ended up on the front page of the paper, the cat was out of the bag.”

Thankfully, they were safe. The crash actually made Rhonda fall harder for Jeff. Despite the disaster, she says he never lost control of his emotions.

“That to me is like the perfect image of exactly how I see Jeff. He’s my caretaker, he’s my provider. He’s my safety, my security, my stability.”

Jeff – the caregiver, firefighter, family man, and farmer. Harvest season became doubly special for this farmer because it’s also when their romance began to grow.

“I would always, every harvest say, you know, we’ve made another harvest together,” says Rhonda.

But in 2015, harvest would become a different kind of season for these two.Jeff had a lingering cough that persisted for several months.  A few biopsies and scans later, the results came back:

Stage 4 lung cancer. 

“We would just lay in bed and just cry and just get as close as we could and just hold on to each other. And like At that time, they told us, Jeff really only had months to live,” Rhonda recalls through tears. “I remember specifically thinking to myself, like. you’ve finally given me that love story. And now it’s going to be taken from me. It literally – it crushed me… To see him cry, it was heartbreaking. I still remember those days like they were yesterday.”

The lung cancer diagnosis led to a role reversal. Jeff, always the caregiver, was now the one who needed more support. Rhonda launched herself into fighting for his life, especially when the cancer spread to his brain.

It wasn’t easy – she found herself going up against the medical team’s recommendation of whole brain radiation.

“I said, no, all we need to do is switch to this therapy that’s been developed that now crosses the blood brain barrier. And they literally told me, you’re making a decision that’s going to kill your husband.” 

Rhonda sought out specialists. She switched both the medical team and therapies. She says within a few months, the cancer that had spread to his brain was gone.

Rhonda’s search for kindred spirits in advocacy led her to The White Ribbon Project, a grassroots movement to elevate lung cancer awareness.

The group started small, but now supporters span the entire country and even the world. Their greatest message is that anyone with lungs can get lung cancer, and it’s about time everyone unified under an umbrella of love and understanding to drive more awareness and research for lung cancer.

Rhonda’s own advocacy helped to save Jeff’s life. 

She wanted to do the same for others, including changing other people’s perception of life with lung cancer, especially stage 4.

“The only thing they know about stage 4 cancer is death. They don’t know about these new, new advances that’s been happening.”

Jeff remembers getting hit with the dire prognosis. “The first doctor only gave me like six months, and I’ve been around a lot longer than that now.”

That’s thanks in part to the biomarker testing he had to undergo before treatment.  Doctors took extra tissue samples to test for genetic (driver) mutations.

Jeff ended up testing positive for the ALK+ mutation, opening up more treatment options. In fact, they say biomarker testing helped Jeff several times.

“It’s helped us on three different occasions not only with diagnosis, but on each time that he had progression of his cancer, the liquid biopsy was able to say, here’s the mutation, here’s the new mutation, and here’s the direction the clear plot path that you need to take for survival,” Rhonda explains.

And that direction has led to more time together. It’s time Rhonda says she never takes for granted. She wants the same for others.

“We’ll save a lot more lives and a lot more families will have the opportunity to make the memories that Jeff and our family have been able to do with being able to have six more years and counting, you know, six more anniversaries, six more vacations, six more birthdays.”

Six harvests after his stage 4 lung cancer diagnosis, Jeff is getting ready to finally retire. Both he and Rhonda are looking forward to the change, spending more time with one another.

They’re also hopeful they can and lift others around them through their voices, and show what is possible, through their love story.

“The most important thing is that people know that after diagnosis that there is hope,” says Jeff.

For Rhonda, this has been a journey of love for Jeff, but also one of growing love for herself.

“I need to be strong. I need to find my voice, my strength, my confidence to be able to carry on, and so I’m trying to learn from this process how I can be a better person and how I can help others. That’s what keeps me going.

Rhonda Meckstroth

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More non-small cell lung cancer (NSCLC) stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

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Caregivers lung Lung Cancer The White Ribbon Project

The White Ribbon Project Stories | Chris Draft

The White Ribbon Project Stories

Chris Draft:
The Team Player

Story 3 of The White Ribbon Project Stories

Chris Draft left if all out on the field when he was playing for the NFL.

“I’ve had asthma attacks. I was in the hospital about six, seven times while I was playing in the league.”

Different teams, same mantra: Don’t take anything or anyone for granted, not while he played, but especially off the field.

He cherished every moment with the love of his life, Keasha Rutledge.

“Intelligent, strong, fierce woman, that just lit up a room when she walked into it,” describes Chris. “She actually graduated a year early from high school, attended Clemson University, graduated with a degree in electrical engineering.”

Keasha was passionate about her education, dance, and also about her health. While training for a 10k race, Chris says Keasha started to feel shortness of breath.

Keasha would get antibiotics and then undergo a chest X-ray before the couple was devastated by the news.

“That was lung cancer. Went to a biopsy right out two days after Christmas,” Chris says. “We found out the most important fact about lung cancer at that moment, and that is… anyone with lungs can get lung cancer now.”

Chris admits he wouldn’t have believed someone with no smoking history and so young could get lung cancer.

“37 years old and amazing shape. Never smoked. If she is not right in front of me and somebody told me that I would probably be like, ‘Oh, that’s kind of crazy. What are you saying to me?’ Because all of the messaging historically was just about the connection with smoking.”

11 months later, Chris and Keasha got married. Instead of gifts, they asked people to support their vision of building awareness that anyone with lungs can get lung cancer.

“She came to me and she said, ‘What if we don’t get presents? What if we ask our family and friends just to donate to the foundation?’ And literally, that’s the point where we started our Team Draft initiative that is changing the face of lung cancer,” Chris says.

So our wedding day was two commitments, you know, one to the lung cancer community and the other one to each other.

One month later, Keasha passed away. From that time on, Chris has dedicated his time and energy to the mission of spreading a message he believes can help save countless lives.

Anyone with lungs can get lung cancer.

And it has been a huge goal in lung cancer, which is the deadliest cancer in the U.S., killing the most men and women in the country each year, according to the Centers for Disease Control.

A decade later, Chris reflects on his tireless lung cancer advocacy.  For him, the definition of winning is crystal clear in this space:

Shifting away the focus from the narrative of the smoking stigma in lung cancer to growing more advocacy and love within the lung cancer community, itself.

“The honesty to just acknowledge that getting people to stop smoking was not anything done out of malice to create some type of stigma. But it was about actually loving people enough to say, we need to get them to stop smoking.”

Beyond that, Chris hopes to refocus lung cancer awareness away from the sole focus of smoking histories to survivorship, and most importantly, to lead all of these efforts with love.

“It starts with caring about the people because if we want to educate, then the lung cancer community has to be bigger than just the people that have lung cancer so that someone can know that anyone can get it before they actually get it right, so that they can support research before it actually happens to them,” he says. 

I’m saying all that matters is if we love our people, then the answers will be simple. Stop trying to complicate it, and that’s where The White Ribbon Project starts.

Heidi and Pierre Onda

The White Ribbon Project is a grassroots campaign started by Heidi Nafman-Onda, a lung cancer patient advocate, and her husband, Pierre Onda, a former primary care physician.

They, along with so many others, felt a lack of support and an unwillingness to represent their lung cancer stories, so they began to build actual wooden white ribbons and sending them to anyone impacted by lung cancer to understand: 

This ribbon is for you. For all of us.

“We’re going to walk with you. We’re going to make sure we get people around you to keep supporting you because we know that cancer is not just a physical thing, but it’s a mental and emotional thing,” Chris shares.

“That’s why even with these ribbons, as we’re giving them out all over the country, we’re challenging people to tell their particular story about what’s going on so they can help somebody that’s in a similar situation. It’s not just to tell your story, just to tell it, but to relate to people so that they can see themselves within that disease.”

When Chris looks at this work, he’s driven by a greater purpose. It starts with the lung cancer community but embraces so much more, including partnerships across other health communities who are also fighting for the same thing: A better future.

“We are touching more than just the lung cancer community to make sure that there’s access for early detection, for screening. Research is going to biomarker testing that’s going towards targeted therapy. That’s the future of cancer care. That’s not just about lung cancer. So as we make it more people more aware of biomarker testing that goes across all cancers, that’s an education that is critical research.”

This former pro football player says his new team, The White Ribbon Project, has had an amazing season this last year. With more ribbon builds and support all across the country and the world.

But it’s a new season, and there’s a lot more work ahead.

“So what does success look like? It looks like all of the cancer centers realizing that everyone who walks in there, it matters. We want them to all get ribbons. But really, the ribbon is just a reflection of saying that you matter.

“We recognize the trauma of this diagnosis. We’re going to stand with you. We recognize that you probably don’t know anything about cancer. So we’re going to help you work through all these words and all this trauma of just being overwhelmed by a diagnosis.”

Keasha may not be here, but her fight and what she stood for is very much alive. That love for others has lived on through Chris for these past 10 years.

And now, also through The White Ribbon Project.

This ribbon says you are not alone and you’ve got people fighting for you. We are out here together. We’re on the same team.

→Back to The White Ribbon Project Stories


Inspired by Chris's story?

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More non-small cell lung cancer (NSCLC) stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

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Lung Cancer Non-Small Cell Lung Cancer Tagrisso (osimertinib)

Ashley’s Stage 4 EGFR+ Non-Small Cell Lung Cancer Story

Ashley’s Stage 4 EGFR+ Non-Small Cell Lung Cancer Story

Ashley was leading a career in her local community college, enjoying being around students, when she was diagnosed with stage 4 non-small cell EGFR+ lung cancer.

In this video series, she shares how getting her kind of lung cancer was like hitting the jackpot in the lung cancer lottery, taking a daily pill instead of infusion chemo, and diving into how her journey changed her perspective and outlook.

Explore her incredible 3-part story series below. Thank you so much for sharing, Ashley!

Ashley timeline
  • Name: Ashley R.
  • Diagnosis (DX)
    • Non-small cell lung cancer
    • EGFR+
    • T790M
    • Stage 4
  • Age at DX: 36 years old
  • Symptoms:
    • Tiny nodules on both lungs
  • Tests for DX:
    • CT scan
    • Tissue removal sent to Mayo Clinic for genomic testing
  • Treatment
    • Tagrisso (osimertinib), 80 mg/day

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Video (Part 1)

In this segment, Ashley describes how seeing her OB-GYN for a cyst turned into news that would change her life.

While working a career in her local community college and being an amazing wife and fur-mom, she was diagnosed with stage 4 non-small cell EGFR+ lung cancer.

She shares her story of how she got diagnosed, how she processed that news, and the long-haul fight awaiting her. Ashley also shares her inspiring perspective and outlook shift — a gift of her patient story.

Thank you for sharing your story, Ashley!

Ashley’s life outside cancer

I’m from Mississippi. I am an Air Force wife.

I am a mom to a spoiled little dachshund. I was in higher education in my career for many years. I was a registrar at my local community college and also worked in the registrar’s office at the University of Alabama. I enjoy students and all of that. I miss them sometimes. I love musical theater. I’ve spent a little bit of time on the stage putting up my heels, though, because I can’t remember lines anymore. 

First encounter with the doctor

A doctor admitted me right away due to the severity of the infection. He said, “First, I want you to go to the imaging center so that we can know exactly where the infection is.”

It’s just typical of an abdominal CT to go up to the lower portion of your lungs, and that’s where nodules were noted. They thought, “Well, it’s not uncommon to have nodules show up in the lungs when there’s an infection in the body.” He said, “We’re not going to worry about that, but we are going to be solution-minded and figure out exactly why.”

Then 2 weeks later, we looked again, and they were still there when I went back for a follow-up. Nothing in the hospital mentioned the lung situation at that time. We only dealt with the issue that I was dealing with right then and there, but the doctor didn’t forget it.

He could have said, “It’s from the infection, and we’re not going to worry about it,” and sent me away. Then I’m a ticking time bomb. But he was solution-minded, kept a watch on it, and then forwarded me to a pulmonary specialist to look into this. It was very rare, so he felt it needed attention.

Initial diagnostic procedures

The pulmonologist initially did a breathing test. If you know anything about how it’s rated, I was at 94%. I was breathing fine. If you’ve never had one, it’s so hard to do all of that in and out.

I made it to the bronchoscope. I was under anesthesia, kind of in a Twilight Zone kind of thing. They did put me to sleep, but it wasn’t full-blown. I didn’t know what was going on, but I woke up pretty quick, too.

He did his own scans, of course, but it didn’t tell them anything. It was not conclusive, so we went to a needle biopsy. He obviously went in through my back to the biggest nodule that I had. I had over 100 spread across both lungs, 1 millimeter or less. There was one that was like 3 mm.

He went in to grab some tissue from that nodule that was a little larger than the rest. That, too, was inconclusive. By this time, I thought, “What is wrong with me?”

He asked me, “Did you do you work in the soil? Do you garden? Do you plant flowers? Do you work in a plant of any kind?” Those answers were no.

He showed me the scan. It looked like the most starry night you’ve ever seen in my lungs.

Those are all little tiny tumors. He said normally doctors would watch this for 4 months and see if anything has grown. If everything’s the same, then these are benign, and we’re just going to watch them. But he said this is very rare.

Observing my symptoms

I was 36 at the time. I’m 40 today. This is way rare for somebody that doesn’t work in the soil, doesn’t work in any sort of plant, doesn’t work around chemicals, and never smoked. He too was very solution-minded in trying to figure out what in the world it was.

I thought I have some sort of fungus in my lungs because he mentioned that. I thought I’m going to get an inhaler, we’re going to blow this junk out, and I’m going to roll out.

I wasn’t coughing. I was tired, but who isn’t tired? I work 40-50 hours a week. I wasn’t losing weight. I had occasional allergies, but I’m in Mississippi, and we have all sorts of stuff. I get a sinus infection every year but nothing abnormal at all.

Nothing had changed. This didn’t tell us anything. That’s when I was sent to a thoracic surgeon.

Even though sometimes you don’t want to know, but at this point, I wanted to know. My patience was on edge. I need to know now.

More diagnostic procedures

The thoracic surgeon wasn’t there to be my friend at all. He was all about business, cut and dry. That made me a little uncomfortable, but he was so knowledgeable. He was the very best I could have gotten in the entire state.

He comes in. He plopped down and said, “Here’s what we’re going to do. We’re going to collapse your lungs, put a tube down, go in, take out 2 or 3 sections of your lungs, and we’re going to send it off to Mayo to evaluate it.”

They didn’t know what it was, so they ended up going to Mayo. I was just staring at them.

I said, “Hold on, back up. You’re going to do what? Do we really have to do this?” He said, “No, it’s up to you. We don’t have to do anything. But if you want answers, this is what we need to do.”

We did it the following week. I went into the operating room, and that was the first time I had ever had anything major done surgery-wise. That was the first time I had experienced real anesthesia. I had a lot to take in. I had to sign papers saying that if they put the tube in and it did something else to something else in my body, they weren’t responsible.

It was possible that there could be an issue with my lung, and they would have to go back in if air got in there. I’m like, “Okay, I can do this. They’re the experts, not me. I won’t know it, whatever it is.”

Upon waking up, I was in a lot of pain. I felt like there were knives stabbing me in the chest. After a few hours with a morphine pump, I was okay. He removed the line and removed the tube, and I was okay.

They gave me a little bit more anesthesia than normal. I don’t know if I was being difficult or what, but it took me a little longer to wake up than most. The whole process was maybe around an hour from prep to recovery. I don’t recall exactly, but it wasn’t very long. That seems like a daunting process. They’re the expert, yet that was their first time.

Waiting for the results

By the time I left the hospital that next day, he did not know yet. He said he’d never seen anything like it. It was like ground-glass-looking nodules. That’s when the pathology went to the Mayo Clinic in Arizona to make the final conclusion. 

Even then, I still didn’t have answers. It wasn’t until about a week later when that pathology was returned to him from the Mayo Clinic.

They tricked me at the doctor’s office, because he said the nurse called and said he was going on vacation. He wanted to check those incisions on the side. 

My incision was fine. I knew it was fine but okay, so I went in. The doctor came in with that pathology report.

I was by myself. My husband didn’t go with me because I thought they’re just checking the incision. It’s not a big deal. I’m going to zoom over, go in, let him check everything, and come back and go to work. But that did not go down like that.

He was looking behind the door, looking around this little tiny room. He’s like, “Are you by yourself?”

I knew right then what was about to come. I knew. I just had this dark cloud of emptiness that just left. I can’t even explain it. I’m by myself. At that point, I thought, ‘I’m not going to fall apart. I’m going to do this.’

There was a gut punch, the sucker punch of my life, especially when you’re thinking it’s just benign. “Nobody has lung cancer in my family. I don’t smoke, so this can’t possibly be lung cancer.”

They concluded that this was an unfortunate case of stage 4 non-small cell lung cancer.

Both lungs were involved. It wasn’t anywhere else in my body, but both lungs had innumerable nodules. No surgery would benefit. I wouldn’t have any lungs left if they took out all those little bits.

Digesting the news of cancer

It was as if it was almost like an out-of-the-body experience. A dream I’m going to wake up from.

He was very not compassionate. He was like, “I’m sorry, darling, this is lung cancer. Do you want this report? She’ll help you with the rest. Good luck.” Pat, pat on the shoulder. Out he went, unbothered.

I know it’s not his job to feel sorry for me or to coddle me or whatever, but it could have been a little bit more. This is life-changing here. Anyway, he did a good job. The nurse was very kind to me and said she was going to be praying for me, which I welcomed.

I kept it together until I was in the room alone. When she went to make the phone calls, I opened up my phone and texted my friend that was a hospitalist for that hospital. I said, “I have to see an oncologist. Who do I see?”

I was fine. I could hardly see the letters or the numbers on the phone because I was fighting tears. The nurse came back in, and I told her who I wanted to see for my oncologist based on the recommendation of my friend.

Thankfully, I had somebody on that side of things that was in the know, because I didn’t know any of them.

I remember walking out of that doctor’s office, and the ladies at the front desk were like, “Hey, how are you?” They had no clue what I just heard. They were just doing their job and being nice, but I remember just not looking up at them.

I just looked down and handed them my paper, gave them my debit card to pay my copay or whatever it is I had to pay. I just kept my head down walking out that door.

That day, I was dressed for work. I had on dress pants and heels, and I felt like I had cinder blocks for shoes on my feet. I was putting one step in front of the other just to get the heck out of there. Just get me out of here.

When I heard the click of my car door, I lost it. I lost my mind. I was weeping and wailing. If somebody was nearby, they likely would have called a crisis intervention officer to come to help me, because I lost it. I cranked up my car and just sat there. 

Breaking the news to loved ones

I had to call my husband and say, “This is what’s happening.”

I called my mother. She asked, “Do you need me to come and get you?” I said, “No, I can drive.” But I don’t remember the drive to her home. Then I called my dad.

The next day, I did a PET scan just to make sure there wasn’t cancer anywhere else in my body. It was a big 2 days.

I was on the phone the rest of the day telling people. They were calling me and sending messages because word traveled like wildfire. I was just mentally exhausted from the whole thing. To have to think about that and relive that in my mind…

People say it’s not a death sentence. But of course, I went straight to Google. I read about 2% or only teens, at the time, survive beyond 5 years. I thought, “I’m out. This is the end.”

That was heavy thinking about my own mortality. I still am forced to think about it, but I’m almost 4 years in. I have gained a lot of strength in that amount of time.

Video (Part 2)

Here, Ashley takes us through the endless tests, treatment decisions, and how she is actually navigating her new take-a-daily-pill life.

Sad as it is, Ashley tells us about how she even felt like winning the lottery when she found out she’s EGFR+, which means taking a daily pill and no infusions.

Listen and read on as Ashley shares her treatment regimen, side effects, and some of the things she’s doing to feel better.

Thank you for sharing your story, Ashley!

Treatment and testing

My doctor initially, the gynecologist that found the nodules in the very beginning, was in our capital city in Jackson, Mississippi. When he asked about sending me to a pulmonary specialist, he said this is his friend. He knew him. I said, “Would you consider someone local to me?” He said he would prefer me to go see this person.

That’s how it unfolded. My doctor initially was already about 90 miles away from me. My mom lives there. It just made sense that since all the other doctors were there that I stay, too.

Plus, my whole reasoning for choosing doctors in that area is because the equipment is more advanced. They have incredible care within their hospitals. It’s just a personal preference for me.

Locally, we have a cancer center. We have 2 major hospitals. For me personally, I just chose to be there because I felt like there was better care there, more cutting-edge equipment 

I think it’s very important that I have a facility that I trust, a facility that I know will fight for me because they’ve proven that they can do that in my diagnosis. It was just a personal preference. Like I said, it’s about 90 miles away. It’s doable to go and come in a day by car.

Completing the diagnosis

My tissue was already at Mayo Clinic from the thoracic surgeon that sent it over. I’m not sure who connected with who, but my oncologist was able to ask them to complete the biomarker testing.

I waited a long time for that. It felt like it was like a couple of weeks of calling. I actually went there for blood work shortly after, and he was like, “I’m sorry. We don’t have it.” I was almost harassing him.

Finally, he did get it back, and he called me himself. He didn’t send his nurse practitioner or a secretary. He called me himself and said, “Okay, here’s what you need. Here’s what we’re doing. This is the plan. I’m going to send the prescription over to where you want it.” I picked CVS Specialty. 

My question was, “Can I have wine?” He’s like, “Oh, so you want to get sloshed now?” I’m like, “I have permission to do so, right?”

We laughed about that. His approach was, “Live your life how you would normally live your life. You just have to take a pill every single day. Don’t worry about restrictions. Do what you feel like doing.”

I’m going to be okay, but obviously with that comes side effects and a whole lot of things that I wasn’t ready for.

Treatment decision-making

At my initial appointment with the oncologist, there is a mountain of paperwork you had to fill out. He was with me for 2 hours because this was a new world. He told me that he was going to send off the tissue and request for further testing from Mayo Clinic.

He went down the list with all the possible courses of treatment: “If you have PD-L1, this is immunotherapy, this is what it does, and this is how you do it. Your hair will be fine. If you have ALK, it’ll be this. If you have this EGFR, there’s a brand-new drug called Tagrisso. It’s a targeted therapy. Take it by mouth. If you don’t have any, then you’ll be on traditional chemo infusion.”

The impact of a pill

I heard ‘a pill taken by mouth,’ and I’m like, ‘I want that.’ But it doesn’t work that way. You don’t get to choose exactly like that. He was rattling off all these letters and numbers, but the thing that resonated with me was the pill.

I was wishing I can do it, even though I had no idea about a mutation or a biomarker or whatever. Thankfully, he did.

Targeted therapy

I was EGFR T790M, and the oral treatment that I got to start targeted that exact mutation. It’s like I have the lung cancer lottery. If anybody can find something positive out of this, I felt like I had overcome the world. I thought, “Okay, I’m going to live. I’m going to be all right. More runway for me. Where are my pills? Give them to me.”

The FDA just approved Tagrisso (osimertinib) specifically for EGFR+ non-small cell lung cancer also with the T790 mutation.

I had seen people sick on infusion therapy, and I don’t want to be like that. There are people that are so terribly sick right now that are fighting just to get up out of the bed, feed themselves, and to go to the restroom.

I don’t take any of it for granted. I certainly do not brag and say, ‘Look at me. I don’t have to do all of that,’ because I know things will change. Eventually, there will be resistance. There will be a next treatment. I’m not going to get to sit here and be here forever.

I don’t take for granted that I was able to take something by walking to my medicine cabinet and swallowing a pill that has kept those cells at bay and has kept my cancer under control.

Treatment routine

For the very first time, I took my first dose at 9 p.m. In my head, I thought, “If I’m going to be sick from this, at least I will be in bed. I will be able to hopefully sleep it off.” That was my whole thinking around it, but it wasn’t like taking an antibiotic.

You feel funny within an hour. The side effects stay and come and go. 43 months in on the same drug, I still have no side effects. It’s just very weird and strange, but I’m thankful that I can still take it.

Side effects

At first, I felt very worn down. I felt heavy. It wasn’t that I wanted to sleep all the time, but I had very little motivation.

If somebody said you can stay in bed all day, I would say okay. That kind of leveled out. I thought this must be really working hard in my body, like a pregnant lady that’s tired. You’re growing a human; you’re going to be tired.

My body’s trying to get used to it and accept it.

There was a skin rash. I had these little things that looked like little acne bumps all over. But you couldn’t treat it like acne. If you tried to do that, it made it worse. 

I was able to take an antibiotic to combat that. It only lasted for about 6 months or so. I don’t have any skin rash anymore.

Then I had a new symptom of GI flares. Sometimes, there’s nausea and a lot of upset stomach.

There was no rhyme or reason to it.

What helped with side effects?

Imodium became a staple in my purse, car, and my office — everywhere. I even made a joke at work. If I’m running, don’t stop me. I’m sorry, this is a fact of life. This is how it is. I still have the GI flares from time to time.

Exercise and diet

Some days, I get to move my body. Sometimes, I feel absolutely exhausted. I don’t know if that’s a combination of medication, being in the middle of the crisis our world is in right now, and staying at home.

Maybe it’s an emotional thing. Getting dressed is a major ordeal.

I tried to move. I had an exercise bike. I try to get on it. I go outside and tried to walk. But the biggest side effect with Tagrisso to date is fatigue.

Some days, if I want to just sit or stay in bed, turn on Netflix, turn on some music, and sit in the recliner or lay down, I will.

When I don’t eat junk, I do feel better. Diet does absolutely play a part. I can feel when I’m dehydrated. I love coffee, so I would much rather drink coffee all day than water all day. But I can feel the difference between when I do drink water and when I don’t. 

I have to listen to my body.

I don’t have a port, so they actually stick me. It’s a lot harder for them to get a vein when I’m dehydrated, and it hurts. I get back to realizing I have to drink water whenever I’m going to the doctor. I noticed a huge difference when I don’t drink enough water. That often helps to boost energy.

I’m not a big supplement person. I know a lot of people rely on supplements, but I don’t. Every once in a while, I have vitamins and whatnot. Matcha and green tea, they say, are helpful. I might drink it today and then not for a month or 2 and then drink it again. I’m not consistent with it.

There is a holistic clinic near where my doctor is that does natural infusion. I badly want to go, but it takes $150 to do it. Insurance doesn’t cover it, but it’s all good things.

It’s supposedly all natural, and it would give you vitamins and minerals that your body needs to help. It’s specifically for cancer patients. 

It’s okay to draw boundaries

I wrote an article, and it was on not feeling guilty when dealing with a physical battle, whatever it is, especially cancer.

I don’t have any children, so I don’t understand what that looks like for some. I feel like as a wife, I have the responsibility of keeping the house clean and having a meal on the table when he gets home from work. Some days, I just don’t feel like cooking. That’s the last thing I want to do, and he understands it.

Don’t feel guilty for the things you don’t feel like doing. Your body has changed. You are the same person, but you’re different. There’s a new thing in you that’s changing, and it affects people differently. Some folks still work full-time.

It’s okay to say no to family if you don’t want to do a family gathering. It’s okay to just say, “I’m going to sit at home, and I’m not going to go to that.” It’s important that we understand that we’re dealing with a lot.

Some might not understand us because they look at us on the outside and think, “They look fine; they must be fine.” That’s always a good education topic. We all don’t look like the cancer patient on TV, but we are still sick.

Sometimes we just have to educate others about how we’re feeling and not feeling guilty about it. 

Getting the targeted therapy pills

My doctor called and said, “You have EGFR, T790. You need to be on Tagrisso. I’m going to call this then or send it up to the CVS Specialty pharmacy.” But they declined it.

I had no clue of any of this or how it all works. I’m on the phone with the secretary, and literally, she and I talked so much. I was writing letters. They were writing letters. too.

Thankfully, I had a very close friend that also works in oncology, and the doctor that she worked for prescribed Tagrisso. She said it has just been released as first line, so insurance companies don’t have the update because it is that new.

I got on the computer and Googled it. I found an article. I printed the article out. I put it in with my letter, and my husband thought to call the manufacturer, AstraZeneca, to see if they can help us.

He did. They wanted to speak with me. I talked to them, and they confirmed that it has been approved in September.

The lady at AstraZeneca said the insurance companies don’t even have the addendum yet because it’s that new apparently, and they’re later in their updating.

I did phone calls to AstraZeneca, to the insurance companies, and to the pharmacy like it was my full-time job for about 48 hours.

I wrote the letter. I printed out the article and sent it back to the insurance company. My doctor wrote a letter. AstraZeneca said they would be happy to write a letter, but it didn’t come to that. They did their own research and approved it.

In the meantime, AstraZeneca understood where I was and that I was a brand-new cancer patient. I needed to start my treatment. They put a starter of 15 pills, and I started that very next day free of charge. Everything worked out within about a week.

That was both an amazing experience and frustrating, to say the least, because I’m blind. I only ever had antibiotics for a sinus infection or upper respiratory sickness.

When the doctor sends in the prescription, there was really a lot of red tape you have to go through just to get in some sort of survival mode.

Here’s this cancer growing in my body. It’s been almost a month now. I need to fight this stuff, and I’m just walking around fighting to get the meds I need.

I was thankful. I was nervous to be able to start the drug because I thought of the possible side effects. Am I going to start throwing up within 30 minutes? Am I going to be able to hold it down? Because a lot of people can’t. 

Thankfully, my body accepted it, because there are many out there whose bodies won’t. It’s a really awesome, incredible, life-preserving drug. We can’t thank enough for the cutting-edge research done on that.

Hopefully, there’ll be something next when I need something that’s similar to what I’m currently on for EGFR resistance.

Progress monitoring

I go every 2 months for blood work, and my blood work is fine every single time. It’s another thing to be thankful for because so many have to come off of their chemo because of different blood counts.

Then I have scans every 4 months. I was doing every 3, but we got pushed out to 4 months just to not risk getting any sort of radiation poisoning. Everything has been stable since.

I do CT scans. I don’t do PET scans. I just do head, neck, and basically full-body CT with and without contrast. 

I’ve developed relationships with the techs and the nurses because I’m a frequent flyer! Sometimes they change out and I won’t know who’s there, but normally it’s the same people.

They’ve become my family. I could say, ‘Wink at me if it’s okay,’ and luckily I get same-day results.

Dealing with scanxiety

So many of my friends that I connected with and the lung cancer community have to wait days for their results. If that happens to me, I would lose my mind.

If I go get a scan at 7:30 in the morning, by 9 a.m., I’m sitting in the doctor’s office getting the results. We all have scanxiety. I’m thankful that I’m in a smaller community.

Video (Part 3)

Finally, Ashley shares how lung cancer changed her perspective, outlook, and her life.

To Ashley, she was lucky enough to be taking a daily pill instead of going to IV infusions, feeling like she still had some sense of normalcy. Despite her odds, she shares the gift of reflection and hope with her cancer community.

Here’s her story of living life with lung cancer. Thank you for sharing your story, Ashley!

Living with lung cancer

I made the mistake of going to Google. Then I started finding groups on social media and saw people that were living with this.

I thought, “There’s hope, and I can keep going. I’m not going to be taken out of here tomorrow. This is not a death sentence. I know what is possible. I know what the end result could be.” 

I started looking at it as a chronic disease and then one day at a time. Because one day at a time is all we get anyway. I’m able now to think about things from a different perspective. I can get low. I can get sad, but I try not to camp out there.

Initially, when I was first diagnosed, I said, “This is what intentional living is supposed to look like.” 

I always hear, “Cherish every day. Life is a gift.” Those are just pretty words. I didn’t truly understand it. It didn’t necessarily click.

When you’re faced with your own mortality and it is concrete that this might end sooner than later, then there’s a mind shift. There’s a perspective shift. There’s a new mindset that comes in.

Do I have it all together? No. Am I always positive? No. But I try to be positive, and I try to always share the good things in that Tagrisso group.

Inspiration in the community

I am proud to tell people I’ve been here for 43 months. To the person that just started last month or today or last week, I want to give hope. There were people in front of me through a screen that offered me hope when they were sharing their story.

None of it is obviously to brag or anything like that, but just to say I’m on this journey. I was 36 years old. It felt like the rug was ripped out from under me.

Ultimately, it’s the club that nobody signed up for. It’s the social club, the army — whatever you want to say —that nobody signed up for.

We were drafted, but there’s an entire international group of incredible people within this community that simply want the same thing, and that’s more runway.

It helps to have people that understand you.

My husband lives here in this house with me. We sleep in the same bed every night. But he has no clue what it feels like to have lung cancer. I can talk to him and tell him how I’m feeling until I’m blue in the face, and he still doesn’t have a clue.

When you connect with someone that also has just cancer in general, whether it be breast or any of it, we understand each other in a way that others can’t understand us. We understand a different outlook on life that others can’t understand. 

Changing outlooks

I often say that I wish people could get just a glimpse of how we look at life now than before. I appreciate things that maybe I took for granted before — all the griping and complaining because somebody pulled out in front of you. Well, it’s not really important. Move along. 

My doctor said you would revert right back, but I don’t want to do that.

A lot of people say cancer was the best thing that happened to them. It took me a while to understand that, but I understand it now because I’m loved by so many. Nobody necessarily feels sorry for me, but they show love. They check in on me, send me a message, and are praying for me today.

Prayer is the big thing in my life. It means a lot that somebody is thinking about me. Before, maybe I wouldn’t get those. It’s just been an incredible experience to be loved by so many people and also to be able to share like I’m doing today.

When I see or hear of somebody that’s newly diagnosed with cancer, regardless of what kind, I feel compelled to reach out to them to say, “Hey, you’ve got this. You’re going to fight. It’s going to get rough. You’re going to experience this, this, and this, but you’re going to be able to keep going. You’re going to get up every morning. Push through even when you feel like giving up, because giving up isn’t an option.”

We were handed this for whatever reason; we don’t know the reason. At first, I thought I was being punished for something, but that’s not how it works. That’s not how the universe serves us. That’s not what whatever higher power that you look up to wants.

This is merely something that has happened to us and not who we are. I only was able to grasp that through time, because it felt like I did something wrong to deserve this diagnosis, when in fact, it just happened. Like a car wreck. We didn’t know what tomorrow held before lung cancer, and we certainly don’t know what tomorrow holds with it. I try to keep that perspective as well.

Being able to take a daily pill

I think at the time, and even now, the pill road was more of a freedom. It’s hard going to the doctor when I’ve had other things come up. If it like was going to the doctor every single day, it’d be like a full-time job.

Taking the daily pill gave me a sense of feeling more normal, even though normal is basically sitting on our clothes dryer.

I try not to use the word ‘normal,’ because I don’t think there is really a normal. But for my own life, I felt like it would give me more of a sense of normalcy.

I wouldn’t be running to the doctor. I wouldn’t be going to the infusion room. I wouldn’t be constantly checking labs.

I had taken a pill before for something, and so that just felt like the normal thing to do. It was something I knew, whereas going to a chemo room with other sick people that were in all kinds of different stages and sitting for however long just felt heavy.

And it is. It has to be. I’m not there, but I have friends that have gone there. They make friends, which I like that part — developing relationships with those around you. I just wanted to be able to swallow a pill at my own home and not feel like I had to be interrupted.

I know one day that’s coming for me. I will have to go and do that. I feel like a targeted therapy is a little bit lighter on your whole body, the whole makeup of all the cells in your body, because it only attacks the bad cells and not the good, unlike what an infusion would. I guess it’s that piece.

There’s also that selfish piece of I want to be able to continue living as normally as possible without the interruption. That’s the selfish side of the treatment.

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Lung Cancer Small Cell Lung Cancer

Montessa’s Small Cell Lung Cancer Story

Montessa’s Small Cell Lung Cancer Story

Montessa shares her small cell lung cancer story that started with a diagnosis at 28 years old. She highlights how she got through treatment, from concurrent chemotherapy and radiation to brain radiation, and recovery.

She also talks about how she navigated life with cancer, being a non-smoker blindsided by the lung cancer diagnosis, how she approached work and time off, finding support in a cancer community, and her lung cancer patient advocacy work. Thank you, Montessa!

Montessa timeline
  • Name: Montessa L.
  • Diagnosis (DX)
    • Lung cancer
    • Small cell
    • 15 cm mass
  • Age at DX: 28 years old
  • 1st Symptoms
    • Chest pain
    • Lingering cough
  • Treatment
    • Concurrent chemotherapy and radiation
      • Chemotherapy:
        • Cisplatin & etoposide
        • Then substituted cisplatin with carboplatin because of side effects
      • Radiation: 22 straight days
    • Brain radiation
      • 13 sessions

Table Of Contents
  1. Videos: Montessa’s Story
  2. First Symptoms
  3. Diagnostic Tests & Procedures
  4. Lung Cancer Diagnosis
  5. Treatment Plan
  6. Chemotherapy & Side Effects
  7. Radiation Therapy
  8. Navigating Life Through Treatment
  9. Support, Community & Advocacy
  10. Small Cell Lung Cancer Stories

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Videos: Montessa’s Story

How I Got Diagnosed
Treatment: Chemotherapy & Radiation
Navigating Life with Cancer

First Symptoms

Tell us about yourself outside of cancer 

I appreciate that we can’t be defined by a box. Beyond patient advocacy, I’m a mentor teacher. Specifically, I work with novice teachers.

My background is a special educator. I have a master’s in autism and inclusion. I really prefer working in populations in our schools that have autism or any teacher who is working with a large group of children with special needs.

I do work for that, and I’ve turned some of the advocacy work I’ve learned from lung cancer into education. I am currently a doctoral student as well. With all of these things, I don’t know how I could keep my calendar and my mind managed!

What were your first symptoms?

I had chest pain, a cough. I remember because it was a day in September where we were having a going-away party. I have a friend in the military, in the Navy, and she was going to be stationed away.

That’s probably why that date and month stick in my head.
I went to the urgent care clinic. They poked around and said, “Oh, you have costochondritis, inflammation around the rib cage.”

It sounded legitimate because I had been working out that summer pulling weights. I don’t know, you trust the medical professionals.

They gave me Motrin, and I went on about my business. Then I developed a cough that wouldn’t go away. A lingering cough. The chest pain was still there.

Describe the first doctor’s visit

I went to a primary care doctor. This was a new doctor. I had never seen this doctor before going to meet her. They said, “Oh, you have bronchitis.” Never gave me an X-ray.

At the time, I was 28 years old. I didn’t know I was supposed to have an X-ray for bronchitis. I work in a school system with kids. I was like, “Sounds legitimate. Maybe the kids get sick. Maybe I just got sick.” 

Then she said, “You have a whopping heart murmur. Anybody tell you that?” I was like, “No, nobody has ever told me this in my life, that I had a heart murmur.”

She was keen to the heart murmur. She sent me to go get an echocardiogram, but never gave me an X-ray and sent me home with an inhaler and antibiotics. November, I remember driving home.

I had back pain. I would have back pain throughout. Even my teachers I was working with would later tell me that I would complain about back pain, but I didn’t connect the two.

Trip to the emergency room (ER)

By the first week in December, I was in grad school for my master’s. The pain came back. I lived with my cousin at the time. I called her and said, “The chest pain came back. You have to take me to the ER.” 

She’s like, “Oh no.” She had told me, too, that the cough was still there even after I had finished the antibiotics. I said, “Oh, I made another appointment. Maybe it just lingers. I don’t know how bronchitis works.”

She said, “Shouldn’t that cough be gone?” Red flags are coming out. I went to the ER at the regular hospital this time. I was in so much pain.

Ironically, by the time I got home from the grad square, I’m like “Oh, I have to take a test.” I have no idea even how I made it through the test because I was really in pain.

The pain had subsided, and I wanted to eat something. I was not worried. I said, “Maybe the ER can give me some medicine, so go ahead and take me to the ER.”

She took me, and they immediately hospitalized me after realizing my oxygen level was like 83 or 85. 

They did an X-ray and said, ‘We found a mass, and we’re keeping you.’

All I heard was ‘IV,’ which meant needle in my head, and ‘biopsy,’ which meant surgery. I was like, ‘I have to go to work in the morning. No, I can’t stay here.’

I’m sitting in the bed, if you could imagine, sitting in the chair. My cousin’s standing above me, [saying], “They found a mass in your lung. You’re sick.” I’m like, “No.” 

In my head, I’m thinking somehow I’m functioning, I’m walking around. I can’t afford these bills. I’m a teacher. Not knowing, the fear of the unknown. Right now, it’s all questions.

They said, “Do you want to see the X-ray?” I said, “Let me see.” I had no idea what I was going to see, but the way I describe it to people is if you have no knowledge of what your lungs are supposed to look like, if you look up in a dark sky with some binoculars, you’ll see dark lobes and maybe some white lines. 

Imagine someone taking a paper towel, balling it up, and covering one of those lenses. Three-fourths of my lung on the left side was not visible. Only one-fourth was visible. That’s how large a 15-centimeter mass was by the time they found it.

Processing the gravity of the situation

I looked to my cousin and said, “Oh, I guess I’m staying.” I still had no idea. At that time, they were just whispering things like, “Oh, is it possibly cancer? Possibly not. We don’t know. We’re still going to do some tests.”

Actually, they said they were going to do all this before I saw the scan. Then it made sense. I understood. I visualized in my mind what the mass was that they were talking about.

Things started becoming clear, like why I was having trouble sleeping. Before, I thought it was my pillow [and] everything else.

Describe your mindset as a 28-year old non-smoker facing this diagnosis

My normal temperament would have been pessimistic, like, “Oh, well, it’s me.” Go into a hypochondriac mode. 

That’s where my faith comes in and part of the book that I ended up writing.

I heard a voice of life whisper to me and say, ‘This is going to be bad, but it’s not going to kill you. It’s going to be a healing testimony for someone beyond yourself.’

I didn’t know at the time whose story this was for or what journey I was going to go down, but I had to hear that because my normal temperament would have been, “Let me lie on the bed.” I would have been a worrywart, a “negative Nancy,” the whole way through the journey.

Everything happened rapidly. I didn’t have time to process, especially when you’re sick like that. They did immediately hospitalize me. 

Diagnostic Tests & Procedures

Describe the needle-guided biopsy

That was the first time I was hospitalized. They did the needle-guided biopsies, where you sit on something like a CT scan or ultrasound. They can visually look at where they’re doing the biopsy. They get a syringe or a needle and take out the tissue. I believe I was awake. It was not as invasive.

I got a call back probably at the end of that week, and they said, “Hey, we didn’t get enough tissue sample. You have to come back in for an open chest biopsy.”

The doctors and surgeons were going back and forth, I think because of the theory of cell spreading. I didn’t know all the science behind what they were explaining at the time. I went back probably a week later.

Dealing with such a large mass

The surgeon at the time was trying to connect me with an oncologist. My cousin, who worked at another hospital, was actually on the call the whole time because he didn’t believe it the first time I was in the hospital with 15-centimeter mass.

He told me, “You must be mistaken. It is not a 15-centimeter mass.” I still had no idea that it was huge. Even though I saw it, I didn’t know it was abnormally huge. I just said, “Okay, it’s the size of a cantaloupe.”

The doctors were very calm telling me these things — until I went later on, and people I met in patient advocacy were like, ‘That was humongous!’

I was the talk of the water cooler probably because everybody would come in and say, “Was anything lighting up? Did you visibly show anything?” That was probably the medical student there. 

Describe the open chest biopsy

I did break down and cry that time. I don’t know why they tell patients some things, but they’re like, “We can’t fully sedate you.” In my mind, I was thinking I was going to be awake.

It had something more to do with the intubation or something. They couldn’t do something because of me lying down flat on my back. I wouldn’t have been able to breathe, but I still was out enough that I do not remember anything. 

Lung Cancer Diagnosis

What do you remember from getting the diagnosis?

It wasn’t until I met my oncologist that I got the diagnosis, even though they probably knew about the cancer because the surgeon was trying to connect me with an oncologist. I didn’t get the diagnosis until I met my oncologist that next week. The doctor was very, very calm.

I have a large family here. Before my mom came up from North Carolina, my extended family was driving me back and forth. A male cousin and I were in the office, and the oncologist said, “It’s a really stupid name. We used to call it oat cell cancer because it looks like oats in the microscope. Now, it’s small cell lung cancer.” 

My cousin and I looked at each other, laughed, and said, “That is a dumb name.” He said, “We’re going to hospitalize you and start X, Y, Z.”

I asked if he could give me one more day because my mom and my aunt were coming in soon. I asked for one day before I had to go back to the hospital.

I don’t know if he willingly did it, but he caved in and let me wait one day until they arrived. I can’t remember the exact day, but it was one day in between. He let me wait, and then immediately I was back in the hospital again.

What were the details of your lung cancer diagnosis?

I started looking up what “small cell” was. I had no reference. My grandfather had died of lung cancer, but I still had really no reference of how deadly the disease was, especially the difference between small cell and non-small cell. I think the paper said “advanced.” It might’ve said “extensive,” because usually it’s extensive or limited.

I know I had limited, but I don’t know if the doctor put “extensive” on there as a call to speed up the process of things or because the tumor was so large at the time. They thought it was in the lung. By the time they found it, it was in the mediastinum area, but it had not metastasized. 

I looked at it, thinking, “How could this be right?” Because again, my body wasn’t functioning at 100% by any means, but I was going day-to-day at work, and then immediately, everything stopped.

How did you process how the cancer would impact your life?

Looking back, I couldn’t wrap my head around it.

I took what he said and heard, “You’re going to start chemo. Your hair might fall out, might not. My patients usually don’t get nauseous because I give them X, Y, Z medications.” 

I remember him talking about the type of chemo I was on would impact my kidneys and that I should drink a lot of water. I’m surprised I could remember all this, but he was telling me all of these things.

Describe the radiation treatment plan

My oncologist did say we’d start radiation, but the radiation oncologist talked more about that treatment side. I think he said after 6 or 8 cycles of chemo, we would start radiation.

Actually, they started a PICC line first, before I had another surgery, to start the first dose of chemotherapy when I was hospitalized. 

»MORE: Read patient PICC line experiences

I didn’t know about some of these other issues, like I had fluid around my heart. I ended up getting a pericardial window when I was hospitalized at that time. They put a mediport in.

I don’t even remember him telling me if I was getting a mediport, but it was the best thing that could have happened when they did that surgery as well, to also put the mediport in.

I was there longer than they thought because the fluid wouldn’t drain off from that pericardial window. I remember him coming in because it was around Christmastime, too, so he was on vacation for some of that time. There were your physician assistants and others coming in during that time.

How did you break the news to loved ones?

That’s a good question, because I don’t even know if I called anyone to tell them. My cousin who was with me at the time, who lived with me, called the doctor. She also called my aunt, and she told her to call my cousin Keith, who’s an interventional radiologist at the hospital, and get us connected. 

We got on the ball, and Keith also called over to the hospital to talk to the doctors to get the doctor language and get what was going on. My cousin called my parents and said I was in the hospital. They called another aunt. The chain got passed through.

My dad would always say, “Tell Montessa. Telephone or telegraph. Tell Montessa; it’ll get around.” I lived with some of my close friends from work, so one of them called the others, and they connected with my principal [manager at work]. Three of my really good friends from work ended up coming to the hospital that night.

»MORE: Breaking the news of a diagnosis to loved ones

Did you get a second opinion?

I was very happy with my oncologist. I trusted my family, so I went with him.

But I think people need to get second opinions. I’ve met several people now, all these years later, who all needed to get a second opinion. I have a friend now dealing with a different type of cancer who got a second opinion, because she didn’t want this radical surgery that they had recommended at first.

We patients have to be educated.

All they can do is tell you no or yes if you go get the second opinion. I didn’t go to one — I won’t name the hospital or treatment center — because I had a coworker who said they treated her husband like a specimen or a research project.

They weren’t looking at a holistic approach, and I needed somebody a little bit more personable. I just wanted to stick with my oncologist.

Treatment Plan

Describe the start of treatment (chemo, surgery, radiation)

Originally, because they wanted to start the chemo right away, they started a PICC line.

I won’t forget this either, even though I do say sometimes chemo has affected some of my memory, but they put the PICC line in.

I remember it wasn’t pointed in the right direction. They had to go back down to interventional radiology to get pointed in the right direction, and these things in my mind when they’re like, “We can’t get it.”

Again, I don’t know why they tell patients all these things, but they were like, “If we can’t get it to work through your arm through here, we have to go up through your thigh or something.” I’m like, “Oh no,” but they got it working and started the chemo right away.

I must have had the surgery after that first round. They put the mediport in and did that pericardial window. I started radiation when I was hospitalized as well. 

The important role nurses play

I remember one of the nurses saying, “I want it to be there to start the chemo,” which was quite interesting. It shows you that personality and the bedside manner of the nurses. They started the chemo then. 

You had to travel between different treatment centers

There was a different little caveat because when I was released from the hospital, my oncologist had me go to an infusion center at another hospital, but the radiation oncologist was at the original hospital. I’ll say hospital A and B. I would have to get picked up, and the church arranged rides for me. 

This was just miraculous. They arranged rides for me to be picked up at my house and took me to radiation treatment. Somebody picked me up from the radiation hospital A and took me to B to get the chemotherapy on the days that I had both radiation and chemo. 

Chemotherapy & Side Effects

Describe the chemotherapy treatment regimen

The chemo would be cycles of like 3. Week 1, I’d have blood work done on Monday, Tuesday, Wednesday, and Thursday. Then I’d get chemo Friday. 

I’d get fluids. They started with cisplatin and etoposide. Eventually, I had to change to carboplatin because I had ringing in my ears. The platinum-based chemotherapy was affecting my hearing. 

Somebody would pick me up [and] take me to the hospital every 3 weeks. That week it would be chemo week, and my mom would come up from North Carolina [on] those weekends when I had chemo treatment. Then I would have another week of blood work. It was always blood work, then chemo week.

What were the chemo side effects?

Every 3 weeks, I’d have these chemo weeks. Then it got to April. I was so fatigued that the doctor had to change the regimen a little bit. I had to take a week off of the chemotherapy treatment.

That type of fatigue, I can’t even describe it. Even to walk from my apartment around the corner to a neighbor’s apartment took every bit of energy that I couldn’t muster up.

»MORE: Cancer patients share their treatment side effects

Self-advocating to get the regimen changed (because of the fatigue)

Yes, because in my mind, I didn’t think that my oncologist was going to do anything. I give him credit, too, because from my other little advocacy groups I’ve been a part of, sometimes they say that the doctors don’t even ask them as a whole picture of, “How are you doing? Are you having any insurance problems, money problems? What are your issues? How are you?” Not just the treatment of the disease but, “How are you?”

I just told my oncologist, “Hey, I’m so worn out, very fatigued.” That week (off) actually made a difference. It helped.

What were other side effects?

Like my oncologist stated at the very beginning, a few of his patients get nauseated. I think he tries to get out ahead of that and have patients handle the nausea. He said, “You should drink water.”

The days I was nauseated were the simultaneous days of radiation and chemo. I would go to chemo those next mornings, and I would feel a little queasy. Those mornings, I tried to drink water and tried to stay hydrated. 

Describe the hair loss and how you handled it

The hair fell out after I got out of the hospital, and my mom helped me comb my hair. Like a little office trash can — my hair at the time, I had an Afro, and so all of my hair completely filled that trash can, just coming out in clumps. I had little sprigs of hair. I went to my hairdresser and just got it shaved off, and it was bald.

I had come to the resolution before that I wasn’t going to wear a wig, because it was too hot for me. I didn’t know what my head was going to look like underneath, but I just resolved to the fact that I would be bald.

»MORE: Patients describe dealing with hair loss during cancer treatment

Any tips on dealing with the hair loss?

Yes, I just went through this with my friend who was just recently diagnosed with uterine cancer. When an oncologist tells you, “You could lose your hair. It could not. Maybe it’s going to stay in.” Right then is when I decided, “I’m going to get some hats, or I wear some scarves. I’m not going to wear a wig.” In my head, I had already decided.

I didn’t know what my head was going to look like. I still didn’t know for sure what was going to happen. I didn’t know what that process of losing my hair was going to look like. 

My scalp became tender, and it hurt when my hair fell out. Who knew?

My hair was braided when I was in the hospital. Then coming back out and having that Afro, the hair was just coming out in clumps. When the hair was scraggly on my head, I said I looked like a cancer patient.

That’s very stereotypical, but my hair looked like little sprigs coming out of it. I said, “It’s better just to get it clean shaven, and maybe it’ll grow back even.”

My mom was there with me at the time. We went over to the hairdresser, and I remember her closing the door to give me some privacy. The hairdresser just cut it off.

Wigs are beautiful. Now I see a lot of very stylish ones. I just didn’t want it because it was so hot. It would feel like it was hot on my head, but you’ll see in some of my other advocacy pictures, I used to wear a wig to chemo, sometimes Afro wigs, and I acted like that was my hair again!

It was hot also because of the hot flashes from hormone therapy (Lupron)

I did have hot flashes. I remember joking with my coworker at the time. She was older, and she would always have a fan on. “It’s always so cold in here.” “Don’t turn this fan off.” 

Then I said, “I know what you’re going through now because having these hot flash attacks now, I can’t joke with you anymore.” It’s like, “Now I understand. Now I can walk in your shoes. I understand why you have the little fan on.”

Radiation Therapy

What was the radiation treatment regimen?

The radiation oncologist explained it was going to be 22 days straight of chest radiation. They were going to resize and re-image the area.

They wouldn’t be radiating good tissue, because with small cell lung cancer, it usually responds well to that first round of treatment, but it tends to come back. The goal was, of course, to shrink that tumor with simultaneous radiation and chemo at the same time, so they explained.

Describe the actual radiation treatment 

For the radiation treatment, it was very painful initially to lie down flat. It was extremely painful. It was so hard to breathe that I would cough.

All of these tests — MRIs, CAT scans, the radiation treatment — you had to lie down flat. I had to come up with a systematic way of lying there. I closed my eyes, and the machine moved over me.

I would count how many times it moved to know how close the treatment was to being over. I’m counting, like, “One, two,” in my head. I visualized how many times I had to move and get up from the radiation treatment. 

What were the radiation side effects?

One of the side effects was I got a dark patch on the circle of my front and back from where the radiation was. They tell you some products to use beforehand, like Aquaphor. I started using some of those not during the treatment, but after. You could put the Aquaphor on to treat those scars.

I still have scars even from the surgery that I call my battle wounds. It took a long time for the dark patch to fade, the dark patch from the front and back.

It’s just something you notice after the fact. I don’t think I noticed it during treatment. You just look down one day, like, “Wow, look at that dark treatment.” 

It was also so painful even to swallow saliva at one point from that treatment. I don’t know what made the pain go away. I don’t know if it’s just as they re-image the area that I can remember lying on the sofa, and it just being indescribable pain to just swallow saliva from that radiation treatment. 

You don’t know what side effects are coming from what, because I was doing both radiation and chemotherapy at the same time. My red blood cell counts were down.

I had to take shots for that. With chemo, I got a shot to boost the white blood cell counts. You just have simultaneous side effects that you can’t pinpoint what comes from what.

Making treatment decisions

Chemo ended in April. Then in June or July, I remember the research coming out, because by then I was reading everything about prophylactic cranial brain radiation. This is the time I thought I would be able to navigate my choices.

During chemo, I had met a lot of cancer patients, mostly breast cancer patients. I met somebody with stomach cancer. They would tell their stories, like, “Oh, well, no, I got surgery, and then I didn’t have to do this.” My church had a cancer ministry. I’m meeting people, like, “Yes, I chose not to do X, Y, Z.” I was like, “You had choices?”

Like, “Wow, you got to choose.” When this news started to break in my head, I was like, “Okay, now I’m going to have choices. I’m going to have options.” I thought I could ask my oncologist, “Basically, can I choose not to do this and choose to do this?” 

I went in, and I knew what the radiation oncologist was going to say. I was like, “Can I have an option?” I’m going to ask the radiation oncologist, “Would you get brain radiation done?” She’s like, “Yes.”

Describe the plan with brain radiation

Sometimes lung cancer will spread to the brain, this primary place, so this was a prophylactic. The radiation was to prevent the cancer from spreading to the brain. I’m sure they had been doing studies before, but I was just reading the research around the time I was sick. 

Even after that treatment, I remember then going back to the surgeon because part of the mass was still there, though it wasn’t active.

There were no signs of cancer, but they thought it was the scar tissue. The tumor was just folding in on itself, but they couldn’t do surgery because the remaining mass was on my pulmonary vein. If they cut that, I could die on the operating table.

That was probably the most devastating for me, to go through all that, get to it, and not be able to take the rest of the tumor out. That was probably not the only one, but one of the breaking points, when they said, ‘Oh, no, we can’t do that surgery.’

Describe the brain radiation

It was 13 days of brain radiation that I had. That process was very different than the chest radiation, because it looked like a mesh-like mask. They conform it to your face, and they tack it down to the table. This mask is over you. 

I decided to keep the mask after treatment because I said, “Every year, I’m a cancer survivor.” Even though I never followed through, I was like, “I’m going to put a sticker on this mask every year,” like a cancer-versary.

Any guidance to others on getting through this type of radiation?

I closed my eyes and tried to count how many times that machine moved. If you are claustrophobic or you don’t like anything over your face, just try to breathe in or do some breathing exercises. Keep your eyes closed during that treatment when they put the mask over you. 

Now there’s so much technology, even the CyberKnife, on how they can do it. Then the key is to lie as still as possible. Don’t move, and it will be over quickly. That was my ammo throughout all of those sessions, to just lie there, get it over with, and count how many times the machine moved before I could get out of there.

How did everything look at the end of treatment (final scan)?

My whole scalp, the top of it was dark. It was odd because I had hair here, the nape of my neck, so it looked like a mullet with no hair on the top. I had to get that cleared up [and] cut them in back, too.

It was interesting that the hair grew there, and I guess that’s the part where the brain radiation was, the cranial part up here. I would get some type of ointment for my head to my scalp.

I was still bald, but until looking at the pictures, I didn’t realize how dark my scalp was. It was a two-tone for my head. 

I was hospitalized in January or late in December. That’s when I started the radiation. By March, the scan started coming back clear. The PET scans showed there was no evidence of the disease. 

The chemo cycle still continued until the end of April. I believe it was every 4 months to get a scan, and then it went to every 6 months. Before I turned 35, they were like, “When you turn 35, you have to go get regular mammograms, because the radiation to your chest put you at risk for breast cancer.”

In my head, I’m like, “I remember signing my life away, but I don’t remember reading that specific side effect.”

Navigating Life Through Treatment

Were you able to drive yourself to the appointments?

The brain radiation, during the chemo, somebody drove me to all of those because some of the medications I was on also made me very drowsy. I couldn’t really drive and be loopy. Some of those pain medications made me out of it. The church organized those rides to pick me up.

I would drive myself to go get the blood work on the weeks I didn’t have the chemo, because I wasn’t on the pain medications the whole time. The anti-nausea medications made me drowsy, too, so they drove me to those. 

I remember the last day of my brain radiation was my first day back at work. I’d missed a whole half of the school year. The kids weren’t there yet, but it was the pre-work for the teachers. I went in and left to go get my last brain radiation treatment.

I came in that morning for check-in and did half a day, then left to go get the brain radiation treatment. I’m like, “Look, I’m tired of sitting here.”

Do you wish you had taken more time off?

I probably took the right amount of time off, because it was good to have a clear start. Originally, I was supposed to go back in May. I would have missed months and come back almost mid-school year, trying to wrap up. It was a clean break to start back. 

I was strategic about the time I still had to take off because I was going back every couple of months for checkups and more scans. I remember even my aunt working it out one time I had to get a bone scan.

I went to work. Somebody picked me up from work [and] took me to the hospital to get injected with that substance they inject you with for a bone scan. Some radioactive stuff. [I] went to go get injected, and you have to wait a couple of hours. 

They brought me back to work, finished the day out, [and] went back to the hospital to get scanned. I think I had no leave, so I had to strategically work things out.

Any guidance for others on how to approach work?

This is a good conversation. Really, I just went through this with my coworker, and I was telling her, “If you have to take time off…” We have a sick bank leave, and you have to go fill out the paperwork with our union or bargaining agreement.

The stigma of “not looking sick”

This is a stigma with cancer. Sometimes people say, “You don’t look sick.” I said, “I’m going to be walking in here (during treatment),” and they’re like, “She’s walking. How can she not work?”

I was young, and she said, “Who cares? Your doctor has written this note for you, and it says you can’t work.” Looking back, I know there’s no way I could’ve worked.

At that time, I didn’t envision how much I was going to be going back and forth to the doctor and how long these chemo sessions were. Actually, I was in there 6 hours all the time.

You don’t realize you can only focus on yourself. You can’t focus on work right now. You can’t do that. It’s not plausible because still it was a whole shift at work. Now you’re in a different life. 

Any guidance on how to deal with the PICC line?

You can relate it like an IV. It’s not going to be in there permanently, and it’s in a better position because it was in my upper arm. It wasn’t right here at the bending part of the arm. 

You’re awake when they do the procedure, so it’s not invasive. I don’t know if they do it for people if they’re outpatient, but we know it was fine because I was already in the hospital, and they could maneuver it or treat it right there.

»MORE: Read patient PICC line experiences

There are products that help with quality of life with things like PICC lines

I just came from my checkup at the Cancer Treatment Center, and they’re putting a covering in there. They had started an IV, and I’m like, “Those are much better.” I knew band-aids used to tear my skin, so that new bandage they have that they can wrap around you is really good.

You don’t think about these little things. I can remember peeling off the coverings very slowly. Some of those bandages, you hold your breath and pull it off.

Support, Community & Advocacy

How did you get through treatment?

It’s important that something else I had to learn was swallow your pride, and don’t be afraid to ask for help.

Like that day when I was fatigued and having to go walk to my neighbor’s apartment, I had already had a ride scheduled. 

Our church was having a big event that happened to be that week that I would end up having chemo. I had to go ask my neighbor for a ride. Just swallowed my pride to say, “Hey, I need help. I can’t do this on my own.” I had friends who supported me, my family, extended family, and the church family as well. Their help was a big part of it.

Then finding something to do, like a hobby. I remember doing some arts and crafts when I first was diagnosed, before I knew how long I was going to be home for. 

Now everybody knows what it’s like from being in this pandemic, but being home when you’re used to being out, or out and on the go all the time, isn’t easy. Find things to do and pick up hobbies. Read books. I read a lot of books and picked up different hobbies. I actually picked up painting now.

Just finding things to have an outlet. I was using a lot of Google, but that might not always be a good thing. You probably have to have your time limit of what you read on the internet as far as medical concerns.

Asking for help is tough but necessary

Yes, and it’s hard to realize, especially if you’re young. Even if you’re an older, independent person, and you go to, “Wow, I can’t drive. I’m too loopy; I can’t drive. My mind is too drowsy. I can’t do it,” or, “I’m not feeling well, I need help. I need somebody to bring me some groceries or food.” 

Things you don’t think about, just the care of people. You really find out who your friends are, too. Also understanding what some people can deal with.

One of my brothers didn’t want to see me bald, or he didn’t want to see me in that state. He wanted to visualize me as he knew me before the sickness. That’s the picture he wanted to maintain in his mind.

Importance of self-advocacy

You can’t be afraid to be a self-advocate for yourself. That means asking questions, and if you don’t know the questions to ask, have somebody there with you. I met a couple recently, and the wife was too emotionally distraught, so I told her husband, “You’re going to have to be the one to ask these questions now.” 

Because I’ve been doing lung cancer advocacy, I was able to give them some questions. This picture is my mom and my sister with me as a celebration of life when I started getting treated at cancer treatment center. There they are, and this is a fight.

I think I don’t know if people realize that cancer is a journey, but it’s also a fight. You put your boxing gloves up and fight whatever comes at you. Imagine a boxing bag in front of me, kickboxing bag or whatever, and punching it down. Yes, so lung cancer can’t defeat you.

There’s a famous poem about that, what cancer cannot do. It doesn’t define you. I’m not just a cancer patient; I’m so much more than that.

What are the top updates that small cell lung cancer patients should pay attention to?

I think it depends on what your focus is when you come out. At the time in 2006 when I started reading all that information, of course, it was bad.

I saw that the bridge had not been moved in the way we treated lung cancer patients, period, non-small cell or small cell. 

I was angry, and I turned that anger into advocacy and having a voice. I saw when I got into that advocacy work. I would go to these conferences. Then I saw that there were a lot of things for non-small cell lung cancer (NSCLC). In the last 5 years or so, there have been a lot of advancements for non-small cell lung cancer. 

If you turn on your TV, you could see a Keytruda drug announcement or other commercials and advertisements for lung cancer treatment options for non-small cell lung cancer, specifically for immunotherapy. We were waiting.

We want to focus on small cell lung cancer [and] say, “Okay, look, some drugs and some of these treatments, we’re not going to be the Cinderella step trial of lung cancer. Let’s get this out here.” I started to realize that there weren’t many of us who have small cell lung cancer who are still surviving. 

So we wanted to give that voice. Some of the other advocates are like, ‘Let’s show them survivorship. Let’s show them hope.’

I want people to know that if your doctor tells you, “Go home and get your affairs in order,” which is what I was hearing from some patients in 2006. Matter of fact, I just heard it from somebody. He didn’t have lung cancer; he had another cancer. They told him the same thing. 

I’m like, “No.” I said, “Your doctors aren’t God. Nobody knows.” Sometimes I think your mental state can help you through that survival, [as well as] who you surround yourself with.

Find your cancer community

If you get involved in some of these groups that have the same cancers you have, you can hear stories.

  • How did I get through the hair loss?
  • How did I get through the neuropathy?
  • How did I get through this?
  • What stories did I read? 

You have somebody who’s walking through the journey with you. Your family is fine. They’re there. They have their own journey being caregivers, but somebody who is walking that journey with you, or has walked it, I think it’s very important that we get connected.

I guess ‘connected’ is a keyword. Just like when I had to swallow my pride, you need to get connected with people or a network of people. 

I know some people don’t want to do that. They want to keep it private to themselves, but I think you have to find someone, even if you go to a therapist. Therapy is not bad to get someone to talk to. Keep your whole person — mentally, spiritually, physically — whole and healthy.

Small cell lung cancer and new treatments

We are on the verge of something. You cannot imagine how many times I’ve been contacted in the last couple of months. I think it was in 2019 that Tecentriq was made from Genentech, an immunotherapy drug for small cell lung cancer.

Now the dates are blurred together, but I’m glad that this is what I’ve been waiting for it and seeing we are on the cusp of saying options, being plural, as treatment options for small cell lung cancer.

I just can’t wait to see that there’s going to be X number of genetic biomarkers for small cell lung cancer, so we can have targeted treatment. How did we know?

I had faith and I heard that word, too, but how do we identify these other patients who might be 12 years down the road with the regular treatment option that hasn’t changed in 30 years, versus the people that will work with this immunotherapy drug?

I hope they have hope. There’s a new group of small cell lung cancer patients who bring a voice to the advocacy as well, who had an EGFR mutation that then transformed over to small cell lung cancer. 

At one point, a researcher told me that even the tissue samples weren’t around to go look at my tissue samples and have them re-examined to see if by chance I have an EGFR mutation. It transformed, but by then the tissue samples weren’t around.

The trend toward personalized and precision medicine

I don’t know if they’ll automatically do it for small cell lung cancer, but I think we’re on the cusp of that happening. We have a stigma in the lung cancer community, as it’s associated with smoking.

Now things are changing, though much of the focus has been on non-small cell lung cancer. Of course, we are the smaller percentage of people, but 10% of the people have small cell lung cancer. That’s still a lot. That’s still a lot of people who will be diagnosed with small cell lung cancer.

The importance of diversity in research and clinical trials

I want more African Americans to get involved. My passion for advocacy and the focus areas have shifted some, even starting with me wanting to get the voice out that young people could get lung cancer. 

I think we’re already there, but now:

  • How do we get into the communities where minorities are affected more or when cancer is deadlier for some of us?
  • What are the comorbidities?
  • What do we do?
  • How do we go to these clinics and tell people your tumor should be tested?
  • If you go to your local community hospital, you should get the same standard of care as if you’re going over to a university hospital. How do we educate them?
You see yourself as the ultimate advocate for others

Starting with working with students with special needs and being an advocate for small cell and lung cancer, period, I see myself as a fighter for the underdog. You have these voiceless populations. 

At a recent checkup, I was down there talking with a gentleman who was there with his wife. They are a minority couple. She couldn’t handle the information. I said, “No, you need to ask them this, this, this, and this.” 

It’s not like the people at their community hospital were trying to talk to them, like, “Oh, we’re just going to do this.” They were not really explaining anything to them. It sounded like they hadn’t even had tumor genetic testing done, but they were already treating it like they had a mutation. I’m like, “They never told you any of this?” 

I’m becoming irate and enraged because regardless of who you’re talking to, you should have somebody, even a layperson, be able to explain it to anyone who comes into your hospital or clinic.

I have an example related to the follow-up for my breast cancer side effects from the radiation. When I first went to get the scans, the radiologists were like, “Oh, yes, you have dense breast tissue tissue,” which is common in African American women. 

My OB-GYN doctor called me after she got the results. She said, “They might tell you that and tell you to come back in 6 months, but with your history, I would go see a breast surgeon.” Just like that. 

Having a stereotypical mindset that it’s common, too, and you’re young, you’re an African American woman, [and] you have dense breast tissue. Just come back in 6 months, whatever. Not being thorough enough. I would not have known.


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Small Cell Lung Cancer Stories


Montessa L., Small Cell Lung Cancer



Cancer details: Small cell lung cancer
1st Symptoms: Chest pain, lingering cough
Treatment: Chemotherapy (Cisplatin switched to carboplatin, etoposide), chest radiation, brain radiation (prophylactic)
...
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afatinib EGFR Lung Cancer Non-Small Cell Lung Cancer Osimertinib

Ivy’s Stage 4 EGFR+ Adenocarcinoma Non-Small Cell Lung Cancer Story

Ivy’s Stage 4 EGFR+ Adenocarcinoma Non-Small Cell Lung Cancer Story

Ivy shares her stage 4 EGFR+ lung cancer story, one that started at just age 47 with a lot of misdiagnoses. She details going through 2 targeted therapies, afatinib and osimertinib, and surgery, a new approach for a stage 4 diagnosis.

The mom, wife, and patient advocate also describes how she approaches life after a stage 4 lung cancer diagnosis, including topics like managing the cancer like a chronic illness, tending to mental health, navigating marriage and parenting with cancer, and her lung cancer patient advocacy work, including co-founding the group EGFR Resisters.

Ivy timeline
  • Name: Ivy Elkins
  • Diagnosis (DX)
    • Lung Cancer
    • Stage 4 (metastatic)
    • EGFR+ (epidermal growth factor receptor)
  • Age at DX: 47
  • Treatment
    • First-line treatment
      • Targeted therapy #1: afatinib (Gilotrif)
      • 3 years
    • Second-line treatment
      • Targeted therapy #2: osimertinib (ongoing)
      • Surgery

I have gotten very involved in advocacy and am knowledgeable about the research and trials and treatments that are coming along. That also helped me feel a little bit better about things as they’ve progressed.

There are a lot of good options out there, and more are being developed. That has helped me a bit, too. I try to focus more on living each day and what I can accomplish that day, as opposed to worrying tons about the future.

Ivy E.

Table Of Contents
  1. Ivy’s Story on Video
  2. First Symptoms
  3. Getting Diagnosed
  4. Treatment Decisions
  5. First-Line Treatment: Targeted Therapy, Afatinib
  6. Second-Line Treatment: Targeted Therapy (Osimertinib)
  7. Surgery (Lobectomy)
  8. Navigating Life with Cancer
  9. Your Work in Patient Advocacy

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Ivy’s Story on Video

Video #1: First Symptoms & Getting Diagnosed
Video #2: Describing Treatment
Video #3: Navigating Life with Cancer & Patient Advocacy

First Symptoms

First, tell us a bit about yourself

I live in the suburbs of Chicago, northwest of the city, with my husband. In about a month and a half, he and I will be celebrating 25 years of marriage.

I have 2 boys. One of my sons is 20 years old and is a sophomore in college. My other son is 18 and is a senior in high school right now. 

How did you know something was wrong?

Around the middle of 2013, I just started having some issues with my right elbow. I couldn’t completely straighten it, and it hurt a little bit. The left side of my neck also was bothering me a bit. Initially, I didn’t think anything of it, but it didn’t go away.

I went to see my primary care physician. He took a look at me and said I was 47 years old and thought it might be my computer and iPad usage. He thought it was an overuse injury.

To be honest, I just completely agreed with him because it seemed that made sense. I had been active, healthy, and never really had any problems. 

He sent me to physical therapy and did all the right initial things. He had an X-ray done of my elbow, which showed absolutely nothing wrong, and an MRI done of my neck, which showed nothing other than the typical deterioration that comes with being a little bit older. 

You went to a lot of appointments

For about 6 months, I went from physical therapy to visiting an orthopedist, getting a cortisone shot in my elbow, seeing a rheumatologist, and seeing multiple physical therapists.

No one could really figure out why my elbow, which they had deemed tennis elbow at this point, wasn’t responding to any of this treatment. My neck, oddly enough, started to feel better, but my elbow didn’t. 

How did you mentally manage the search for answers?

I was actually getting kind of frustrated because I was being really good at following everyone’s recommendation for the next doctor. I was doing all of my physical therapy exercises, getting my cortisone shot, and following up, but nothing was improving.

On the other hand, there was a little piece of me that kept thinking, ‘Do I keep pushing forward?’

My husband and I talked about it. He talked about the problems with his knee and that that was “his thing” now. He suggested maybe this was my thing for getting older, that this would be my “weak spot.”

Part of me was wondering how far I’d keep going in terms of going to doctors and trying to figure things out, but it just all seemed odd. The whole elbow issue kept getting worse, not better. I got to the point where just putting my hands up to wash the back of my hair hurt. 

I was 47 years old, and it just didn’t seem right. I kept going and was determined to figure out what was going on. It took a good 6 months!

Getting Diagnosed

How did you start getting answers?

Eventually, I ended up at an orthopedist who specializes in the wrist to the shoulder. He did an MRI of my elbow because he was trying to figure out what was going on.

He saw there was a mass in there that was on the joint and looked like it had eaten away a little bit of the bone in the area. He didn’t really know what to make of it, so he sent me to an orthopedic oncologist. 

Describe the orthopedic oncologist visit 

When I went to the orthopedic oncologist, I was already terrified because the word “oncologist” is in the name. I went with all my various reports.

When I first saw him, he thought I looked healthy and was in good shape. He said to me that if I presented differently, he would think that this was a metastasis possibly from somewhere else. 

But he said he was really 90 to 95% sure that this was a benign condition called a giant cell growth. He said he’d do a biopsy. No rush to get that scheduled. They’d go in and take a look at it.

If that’s what it was, they’d take it out, and I’d be good to go. All that happened, but it wasn’t benign. 

Describe the elbow biopsy 

The biopsy wasn’t bad. They didn’t put me under general anesthesia. They gave me a twilight drug, so while I was awake, I wasn’t really too concerned about anything going on. 

The actual procedure was quick. I remember having to put my arm in a certain position and hold it there. They took the cells that they needed, and after a brief recovery, I just went home. It wasn’t particularly painful afterwards, and it wasn’t something that I felt was particularly traumatic.

Did you experience anxiety waiting for results?

I was pretty nervous after I had the elbow biopsy. Even though my oncologist had said he was pretty sure that it wasn’t going to be anything, I was still nervous. It took a good amount of time before I had results back, a couple of weeks or so.

The thing that complicated everything a little bit was that I was having all of this done in between Thanksgiving and the winter holidays, so things slowed down.

It was hard to get in touch with people. I was preparing for the holidays myself, with 2 kids who were going to be home and out of school. It was a really, really stressful time.

»MORE: Patients describe dealing with scanxiety and waiting for results

What were the results of the scans?

The results came back from scans that the mass was malignant. It came back as adenocarcinoma, which doesn’t originate in the bone. They knew at that point that the cancer I had came from another part of my body.

I remember asking the orthopedic oncologist where adenocarcinoma came from. He said either the lungs or the breast.

Initially, I was convinced that I had breast cancer. I had no idea that lung cancer was something I could get. I didn’t know what I know now, which is you only need lungs to get lung cancer. I didn’t think I had a risk for lung cancer.

Recall the moment of the diagnosis

It was actually a call that I received. My oncologist called me and wanted me to go into the office and set up an appointment, but I already knew why he called.

It’s not good news [when] an oncologist, who already said he thought it was probably benign, tells you he wants you to go into the office to get the news.

I convinced him on the phone to just tell me what was going on. That’s when I had the conversation about how it was malignant and adenocarcinoma. It was over the phone.

My stomach dropped. I don’t know if “shocked” is the right word, because I always knew there was a possibility it could be cancerous. I was very, very shaken by that news. I almost didn’t even know what to do next. It was a nightmare coming true.

Did you break the news to loved ones? 

My husband was with me when I found out at home. At that point, I didn’t tell anyone. I didn’t tell my parents. I didn’t want to tell anyone yet because I had no idea what it was.

I wanted to get more information about where it came from and at least have the PET scan, which was the next thing that was scheduled, before I told anyone.

It was slightly complicated by the fact that my kids were young and somebody needed to watch them and get them to school when I went downtown to get to early morning appointments. I do remember telling a couple friends that I needed to get some tests done for my elbow, but I didn’t go into detail at that point.

»MORE: Breaking the news of a diagnosis to loved ones

Describe the actual PET scan

It didn’t take that long for me to get the PET scan scheduled. It was within the week. 

Before you actually have the physical scan, you need to get an IV in your arm so that they can put in this (iodine-based) contrast material. That’s how they can see what areas in your body light up that have cancer, basically.

I went in, got my IV, had the contrast injected into the IV, and then I had to sit for about an hour in a room so that there was enough time for the contrast to spread throughout my body before the actual scan.

It was painless. You don’t feel any of that other than the stick of the IV. It’s a bit stressful because you’re sitting there by yourself, waiting for the scan.

The scan itself is relatively painless, too. It doesn’t take all that long. I laid down on a stretcher-type platform, went into the machine, and the scan didn’t even take longer than 30 minutes. Then it was done.

Thrust into a whole new world, overwhelmed by new terminology

This was the beginning of a whole new language. All of a sudden, people were talking about PET scans, getting contrast dye injected, and other scans I might need, like CT scans and brain MRIs. It’s overwhelming to go from being a normal, everyday person to entering the world of oncology.

There’s a lot of terminology you need to learn about. You’re learning about this at a time that you’re at your most vulnerable, because you’re terrified about what’s going on as it is. It’s hard to take all of that in.

Do you recall when you got the full diagnosis?

After the PET scan, I didn’t have to wait very long to find out the results. I found them out the same day while I was still in the hospital, treated in a major medical center in downtown Chicago. It was a quick process.

I remember my husband and I went back after lunch, and then we found out the results of the scan. 

I sat down with the orthopedic oncologist. He told me that they found from the PET scan there were some areas in my lungs that had lit up, almost a 3-centimeter mass in my upper right lung, along with some small nodules, but that was the main area.

He also said they found the elbow mass also lit up, so it was also cancerous, as well as an area in my neck, where I had experienced my neck pain. There were a few other bones that did, my rib and my pelvis.

He said that was considered metastatic lung cancer and the next stage would be for me to talk to a thoracic oncologist. He referred me to someone and said he wanted to get someone from that department in the hospital to come in and speak to me that day. 

It was over the holidays. My PET scan was on December 26, and it just wasn’t possible to get anyone to talk to me right then because a lot of people were on vacation. 

How did you process the stage 4 lung cancer diagnosis?

My husband was there with me. To be honest, a lot of it is really a blur. I know we went home. I know I pretty much didn’t really want to talk to anyone. 

I know my husband called his family, called my parents, and told them about the cancer diagnosis. It was a school day, so then my kids came home from school, and we didn’t want them to know what was going on yet. I had just been diagnosed. I didn’t know what my treatment was and what was going to happen.

We put on a fake smile on our face and went on with our regular day. It was almost surreal. I don’t remember a lot about those few days.

I was just trying to process everything and was very upset, crying tons, but also feeling like I wanted to hide that from my kids. It was a crazy time.

»MORE: Patients share how they processed a cancer diagnosis

Genomic testing for biomarkers

I didn’t know this, but once they had determined it was lung cancer, my hospital, Northwestern, automatically sent my sample for molecular testing. Since this was back in 2013, they didn’t test for as many things as they test now. 

They tested for EGFR, ALK, and KRAS. I didn’t know any of that was going on until I got a call from the nurse who works with my new thoracic oncologist, whom I hadn’t even met yet because my appointment was set for January. The nurse called me a couple of days before that appointment.

She was calling and getting my information. She asked if anyone had talked to me about molecular testing, and I said no, though I’d done some reading about it.

The nurse let me know that I had the EGFR mutation, which she said was a good thing because they had drugs and medications that I could take that could target that in the form of oral pills.

This is before I even met my thoracic oncologist. While it didn’t completely calm me down, it did make me feel like there was some hope. 

It also changed completely how I thought my treatment would be.

Treatment plan: targeted therapy

Initially, as a person without a background in science and oncology, I had never heard of targeted therapy. I thought that my treatment was going to be what you think of when you think of someone with cancer. You have chemotherapy, you lose your hair, and you’re sick. 

I found out from the nurse that it would be a very different type of treatment. That was the one bright ray of sunshine that clicked in before I actually met my oncologist.

Did you consider a second opinion?

I did not consider a second opinion. I was introduced through mutual friends to someone who lives 20 minutes away from me who’s also living with lung cancer, a woman about my age who’d been diagnosed a few years before me. She’s very involved in advocacy.

I talked to her right after I was diagnosed. She was the one who told me about mutations and targeted therapy, so I had somewhat of an idea of what molecular testing is when I spoke to my oncologist nurse. 

She had also told me about who some of the best thoracic oncologists were to see in the area and even helped me get an appointment with Dr. Patel at Northwestern, who was my oncologist. I felt very, very good about the person I was seeing.

Treatment Decisions

What was the treatment plan?

I had mentioned that I found out I had an EGFR mutation on the phone with a nurse before I went into the office. When I went for my first appointment, Dr. Patel suggested I have a few more tests, one of which was a brain MRI, which I hadn’t had at that point. 

That’s when I found out that I also had 8 small lesions in my brain, in addition to the bone involvement.

As a result of all of these additions, Dr. Patel decided that it would be a good idea for me to speak to a neurosurgeon and to a radiation oncologist in the hospital before we made the final decision about starting me right away or not on an EGFR targeted therapy medication.

Jumping from appointments to the next

During one very, very long day in the hospital, I ended up going to talk to a neurosurgeon because it turns out that the pain that I had in my neck, which was one of my early symptoms, was the result of a pretty large-sized tumor.

It was really high up on my cervical spine that didn’t show up in the initial MRI of my neck that my primary care physician had ordered. 

When they got better visuals of that area, they realized that where it was located could actually cause my cervical spine to become unstable and possibly even collapse, which would not be good for my survival.

The neurosurgeon talked to me about the pros and cons of having surgery before I started on treatment for my EGFR mutation. That was one of the visits that I made that day. 

Then I also went and talked to a radiation oncologist that day, who talked to me about the pros and cons of having radiation on some of those brain metastases after starting my targeted therapy.

I think the concern there was that if there were 8 small lesions that could be seen on the scan, there might be more lurking that might not even have showed up on the MRI. She gave me the impression that at some point, I might need to do whole-brain radiation. 

I went to those 2 appointments and went back to Dr. Patel. I started that day being somewhat terrified, and I was beyond terrified by that time. 

My husband was with me, so I had that support. To tell you the truth, it was just so overwhelming. I have to say I am very glad that I had all those conversations, and I’m glad all those doctors weighed in with their opinions and Dr. Patel talked to them.

They really figured out what would be the best approach by speaking and working together. I’m so glad that happened.

Final treatment decision plan

It turned out that Dr. Patel felt that by starting me on a targeted therapy for my EGFR mutation, which she explained to me could basically shrink the tumors or even have them disappear, that that might take away the brain metastases and reduce the tumor in my cervical spine. 

The concern with my cervical spine was whether that tumor was actually keeping my cervical spine from collapsing. That’s where the neurosurgeon came in. 

Guidance to other patients and caregivers on treatment decisions

When I was first diagnosed, I felt fortunate I found a doctor whom I really felt like I trusted. From the moment I talked to her nurse and the moment I talked to her, I felt she knew what she was talking about. I had verified that with the other lung cancer survivor I had met. I trusted her.

She listened to my questions and tried to get to know me as a person. I decided at that point in my day that I needed to go with that trust. I needed to allow the oncologist and her clinic to coordinate all my appointments and tell me what I needed to do next.

That worked for me, but I don’t know if that would work for everyone. It depends on who your initial doctor is, whom you start with. 

Also, there was really no time for me to get a second opinion because of this concern about the lesion on my neck. I listened to her. I left the hospital that day with a prescription for my targeted therapy, while wearing a neck brace. 

Why did you have to wear the neck brace?

I had to wear that neck brace for 3 months. That was the concession to the neurosurgeon. If I felt the slightest bit of pain or increased pain in my neck, I would go back and see him.

I did have to have regular follow-ups with the neurosurgeon for a while, every couple of weeks, just to see how my cervical spine was doing.

First-Line Treatment: Targeted Therapy, Afatinib

Describe the targeted therapy (afatinib)

It was a once-a-day oral medication. I took it every night before bed. I had to make sure that I didn’t eat for 2 hours before I took the medication, so no late night snacking after dinner. I had to make sure about that.

In terms of taking it, that was the only restriction. 

What were the targeted therapy drug side effects?

There were side effects that I experienced. Very common side effects for these type of TKIs are rash, diarrhea, dry skin, and split fingernails or even the skin around your fingers. 

At least at the beginning, I experienced all of those. Again, I have to say that my oncologist was very thorough about letting me know what to expect and what I could do from the very, very beginning to try to be proactive and get ahead of those side effects.

I gargled with mouthwash for mouth sores, I had a prescription to put on the rash if it developed, and I also had an antibiotic to take to prevent it from getting worse upfront. I went into treatment armed very, very well with ways to deal with and handle the side effects that I could develop.

It wasn’t that difficult of a process for me, but I was also very fortunate that I developed what seemed to me to be a good number of side effects, but a mild case for those side effects. Over time, I learned how to get out ahead of them. 

How effective was the afatinib?

The bone in my neck that they were very concerned about grew back. I still remember a couple months after visiting my neurosurgeon, he said they wouldn’t have to do surgery. He said there was a profound improvement in my cervical spine, so that was amazing. 

All of my brain metastases disappeared! The small nodules on my lung disappeared, while my main tumor shrunk a good amount but didn’t completely go away. 

I felt pretty good. Those results continued for close to 3 years.

Managing cancer as a chronic illness

That’s exactly how I was approaching the lung cancer. I had to go back every 3 months during those initial 3 years for scans, and I still do.

In between scans, I pretty much would live a normal life. I was able to do things with my kids. I was driving places and seeing friends. It was a totally normal life.

You were living an active, normal life on the targeted therapy for 3 years

My family and I traveled a lot during those 3 years. I’ve always loved travel, so we went on several trips. I can’t remember which trips were prior to the afatinib’s efficacy slowing or stopping, but we did some fantastic trips.

We went to Puerto Rico, Iceland, Caribbean, to Mexico. We’ve done some really amazing trips! We continued traveling.

I got very involved in advocacy and traveling for lung cancer advocacy work as well. It really did not put any sort of damper on my activities.

Second-Line Treatment: Targeted Therapy (Osimertinib)

What brought you back to treatment?

In the middle of 2016, my oncologist moved from Northwestern to University of Chicago, so I went with her. My first scan of my lungs after that transition looked like I might have a little progression.

We weren’t completely sure because scans were being done on different machines and being read by different people. That sometimes makes things more difficult.

Describe the liquid biopsy

Liquid biopsies had started to become a thing. I had a Guardant360 liquid biopsy to see if anything would show up. Nothing did. The results of the liquid biopsy came back, and it was like I didn’t even have cancer. Literally nothing showed up.

It’s basically a blood test. You get a couple of extra vials of blood taken beyond the regular labs when you go in for a visit.

They send it away to a company that can look at that blood and see if they can cut mutations from cancer cells or pieces of DNA that are actually floating around in your blood. 

If they find something, it’s fantastic because you don’t have to have a more invasive biopsy. But if they can’t find something, it’s not necessarily that the cancer isn’t there.

There are false negatives with liquid biopsies, where sometimes people are considered non-shedders, where their cancer doesn’t really shed those cancer cells or parts of cancer cells.

Frequently, if you are just beginning to have disease progression or you have a type of cancer where you don’t have tons of it in your lungs, you might be a non-shedder. That came back, and there were a lot of inconclusive results at the beginning.

Describe the lung tissue biopsy

Some time passed, and I went for my next scheduled CT scan. It looked like there still was some more growth. My oncologist scheduled me for a lung tissue biopsy, where again, this was an outpatient procedure, just a day procedure.

I went in, had twilight medication, and had a biopsy needle put into my lung to take out some tissue. I had that tested to see if I had developed some new mutation that might be able to be targeted with another type of targeted therapy.

What’s the T790M Mutation?

During the time I’d been treated at the beginning, a new drug went through trials and developed to treat T790M, which is a very common secondary EGFR mutation that people get who are treated with some of the original targeted therapies for EGFR, like afatinib and others.

When my results came back and they said I had the T790M mutation, I was able to go on this new targeted therapy medication, osimertinib. 

Describe the osimertinib, second targeted therapy drug

I went on that and had a fantastic response to that one as well. The tumor in my neck and brain metastases had never come back since the beginning, but I had a remaining primary tumor in my lung.

That tumor ended up shrinking 50% from the size it originally was. While it hadn’t shrunk that much with the afatinib — it stayed stable — on this second drug, it had really decreased in size until it was about 1.5 centimeters. 

Over what period of time did the tumor shrink?

It happened pretty fast, within the first 3 months. Then the tumor remained stable for an incredibly long period of time until I had surgery.

You’re still on the osimertinib

I’ve been on osimertinib now for a little over 4 years. My changes in treatment sort of went along with my oncologist changing hospitals.

At the very end of 2019, my oncologist went back to Northwestern from University of Chicago. They were all promotions for her. It was all in the Chicago area, so it wasn’t difficult for me.

But those switches did make things a little confusing in terms of my scans. When she changed locations, there was a question about whether there was progression in my lungs or not.

Still, nobody knows the answer to that, but a lot of time had passed at that point. I was 6 years out from my initial diagnosis.

Surgery (Lobectomy)

Surgery was brought up as next treatment step

While I was first diagnosed, no one would ever suggest a stage 4 lung cancer patient have surgery.

It was becoming an option for some stage 4 patients to be able to have more of an out-of-the-box treatment, meaning surgery or radiation, of their primary tumor in order to hopefully improve the patient’s overall survival.

Initially, when it was questionable whether my primary tumor was growing again, my oncologist asked how I felt about getting my primary tumor radiated since it was the only place that has even grown in my entire time since diagnosis.

I thought that was a good idea. It went to tumor board at my hospital. They came back and said I was a candidate for surgery. I decided if I was a candidate for surgery, I’d rather do that than radiation because I could [take out] an entire lobe of my lung out, where all of the cancer was, and hopefully not have side effects that might come from radiating that area of the lung. That’s what I ended up having done just about a year ago from today.

I had surgery, my upper right lobe removed, and as a result of that, became no evidence of disease (NED). It’s a year later, and I still have no evidence of disease!

How did you feel going into surgery?

Right before the lobectomy, I had to do a special bronchoscopy, even though I had a PET scan also prior, to make sure nothing lit up anywhere other than the primary tumor. They wanted to make sure there was no cancer in any of the lymph nodes outside of my upper right lobe.

That was the first thing because they wanted to make sure that if they were going to take out a portion of my lung, they wouldn’t find cancer somewhere else. That would negate the benefit.

I went to the hospital that day with my husband, changed, and got my IV. There I am with my surgeon (picture below) and her physician’s assistant (PA). This was general anesthesia. 

It ended up actually being a 4-hour surgery. They removed my upper-right lobe. By the time I came out of surgery, they had me up and walking probably within an hour or 2.

I spent a total of 2 nights in the hospital. Getting up and walking a lot was key to both pain management and getting my lung capacity up again. 

I won’t say it was pain-free, but I was so glad I had the surgery. I really am.

Guidance for others on recovering from surgery

There are 2 things to say here about that. I tend to be a person who usually doesn’t take pain medicine. I was given a lot of advice before the surgery. People said, “If you feel pain, you need to take that pain medicine before that pain becomes overwhelming.”

I did do that. I made sure to take advantage of the pain medicine that they were giving me. I was trying not to be a hero and tough it out. I think that made my recovery a little smoother.

I also made a big effort to get up and walk like they told me to, both in the hospital and once I got home.

I walk even to this day 30 minutes daily on the treadmill. I couldn’t do that right out of the hospital. In the beginning, I was walking 5 minutes on the treadmill, and that was enough, but I kept it going.

I’ve never been a marathon runner, but I don’t really notice any long-term impact on my lung capacity.

My advice would be to take your pain meds and walk as much as you can.

How was it hearing that you were NED?

No evidence of disease was never something I thought I’d ever hear when I was diagnosed. Stage 4 lung cancer, you don’t think you’re going to hear that.

It is amazing to hear. Does it mean the cancer will never come back? We don’t know, but it is hopefully going to last long enough to push things a little bit down the road. If it does come back, hopefully there will be newer and better treatment. Fingers crossed, it doesn’t come back. That’s always the hope. 

Describe the ongoing treatment

My follow-up hasn’t really changed. I’m still taking the osimertinib because no one really knows what would happen if I stopped taking it in terms of brain meds and the lesion on my neck.

Since I really don’t have any side effects from my second targeted therapy, there’s no real advantage to getting off of it at this point.

I’m still on what’s termed “active treatment,” so I still see my oncologist every 3 months. Every 3 months, I have a CT scan of my neck and my chest to check my lungs and check that lesion. Every 6 months, I have a brain MRI. That’s the ongoing treatment at this point.

Navigating Life with Cancer

Describe living with cancer as a chronic illness

The whole living with my cancer, there is still a lot of uncertainty that comes with it because you still are living between scans. I do have to say earlier on in my whole my diagnosis journey, I probably experienced more anxiety between scans and getting ready for my next scan than I do now. 

It’s twofold. It’s after you’ve been living with something for more than 7 years, it’s hard to sustain that amount of anxiety. Also, it helped me knowing that I’m currently no evidence of disease. That helps a little bit.

In addition, just the fact that I have gotten very involved in advocacy and am knowledgeable about the research and trials and treatments that are coming along. That also helped me feel a little bit better about things as they’ve progressed.

There are a lot of good options out there, and more are being developed. That has helped me a bit, too. I try to focus more on living each day and what I can accomplish that day, as opposed to worrying tons about the future. 

I’m not saying that’s an easy thing to do. I’m over 7 years out. I’ve had a while to work on that — and a good amount of therapy — to work on that and figure it out, honestly.

Changing my mindset in that way has really helped me in managing the fact that I am living with these ups and downs and constant uncertainty and more anxiety. Then you have your time between scans, where things quiet.

How did you take care of your mental health?

I think it is critical to make sure that you take care of your mental health, as well as your physical health, if you go through something like a cancer diagnosis.

You shouldn’t feel in any way ashamed or like you don’t want to ask for help because, my gosh, a cancer diagnosis is a big deal. People shouldn’t feel like they need to know how to handle that.

If anything, it’s a huge, huge stressor. I cannot imagine having been able to handle living with lung cancer for over 7 years without having a therapist, without being on an antidepressant.

It has really helped me be able to keep myself in a good, stable mindset, in addition to being stable with my cancer so that I could live a good and balanced life.

You don’t want cancer to become your entire life. I’m able to talk about other things and be here for my husband, my kids, my friends, and my 89-year-old mom.

I can’t underestimate the impact of taking care of my mental health because it’s made it so that I’m not just surviving with cancer.

I’m actually living my life fully with cancer. I don’t think I would’ve been able to do that if I hadn’t made that a priority.

How to navigate marriage post-diagnosis

You have to have patience with each other, and you have to talk about things. It was very hard at the very beginning when I was first diagnosed. For him, his wife had just been diagnosed with lung cancer.

I also couldn’t drive because I was wearing a neck brace, and I was a stay-at-home mom at that point. He had to take over a lot of things that he hadn’t been doing. He had to help coordinate rides for our kids and do a whole bunch of other stuff that I wasn’t able to do for a while. On the flip side, once I started feeling better, I wanted all that back.

That was also difficult because he had gotten used to being an active helper, and then all of a sudden, I didn’t want that anymore. Those are things that can cause stress in anyone’s marriage.

In order to get through things like that, we just learned that we really had to talk it out, try to understand how each of us was thinking about things, and try to put ourselves into each other’s shoes. With a lot of patience, we’ve managed to work through issues like that when they arose.

How did you take care of your children while going through treatment?

Once I had that conversation with my oncologist nurse when she told me that I was going to be on an oral medication, that’s when we decided that we were going to tell the kids what was going on.

They were 10 and 12. We wanted to make sure that they knew that there was a plan and what the plan was going to be.

We sat down and told them, which to be honest was probably one of the most difficult things that I’ve ever done in my life, because you feel like you’re ripping their innocence away.

They’re kids, and they never think anything’s going to happen to their parents. Then they found out that I had lung cancer.

We have always tried to be honest with them but not give them information until we know the next play.

Even when I progressed, until I knew what was going to happen, there was no need to go into all of those details with them. We answer any questions, open questions, and all that, but we try not to create concern without addressing what the next plan is.

We also found early on that the boys didn’t really want to ask me questions about what I was going through. They wanted to ask my husband instead because they were afraid that they would upset me or they would say it the wrong way. They tended to go to him more and ask questions about what I was going through, but that was fine.

Again, 2 boys, 2 different personalities. One was more comfortable talking about things; one wasn’t. You have to take your cues from that and address each child with what they need. You might have to go to ask, “Do you have any questions? What are you thinking, and what might just be blurting it out in the breakfast table?” You have to go with their cues.

»MORE: Parents describe how they handled cancer with their kids

Did you seek out connections in the lung cancer community?

I wasn’t ready for it when I was first diagnosed, because different people are ready to connect with others at different times. I needed some time to just grieve.

I think the fact that my life was going to be different from what I expected, that’s when I needed the cancer community. In general, I am more of an extrovert.

After a certain period of months, I reached back out to the woman who I had been introduced to who lives near me. She also has lung cancer and is now one of my dearest friends and partner in advocacy.

Through her, I ended up getting connected with the LUNGevity Foundation, which is a patient advocacy group in lung cancer. They had a local walk that I participated in and met some people locally initially.

Then after some time, I went to one of their big summit events they have each year in Washington, DC, and met some more people. As that occurred, I met more people who were part of the lung cancer community and living with lung cancer.

I actually began to feel an even more sense of hope and potential for my future because I was meeting people who were living well with lung cancer, who were living very long-term, good lives.

Your Work in Patient Advocacy

How did that community relationship-building shift into advocacy?

I started to learn about advocacy opportunities and how I could help other people, which made me feel like I had a purpose. That was really important to me, too — to take what I had learned from talking to other people who had helped me along the way and pass it along to others.

That’s why I first got involved in advocacy. As time went on in advocacy, I found that what I really, really liked was learning more about the research.

Now, just quickly about my background, I have absolutely a completely non-scientific background. I was an English major as an undergrad. I have an MBA in finance, so there’s no science other than the required classes.

Once I was diagnosed with the disease, I wanted to learn all about it. Then once I learned as much as I could through attending conferences and things like that, I wanted to be able to help.

There were various different programs that you can participate in as a patient through the Department of Defense as a consumer reviewer, through ASCO and ACR, where you can help provide your patient perspective and research. I started doing those programs.

Talk about the patient group you co-founded: EGFR Resisters

In 2017, along with 6 other patients and a caregiver, I co-founded the EGFR Resisters Lung Cancer Patient Group, which is an advocacy group completely patient-founded and patient-driven for people like myself who have EGFR-positive lung cancer.

We pretty much are an online patient community. We’ve grown since our very beginnings of just 7 of us to about 2,500 people now from 75 different countries. We have a closed Facebook group where members who are patients and caregivers can interact, learn from each other, support each other, and learn to advocate for themselves.

We share tons of information in this group about things like second opinions, clinical trials, symptom management, and everything. We also are trying to help accelerate research in our own type of lung cancer.

We’ve partnered with other advocacy groups and industry organizations to actually do research on our own disease and also to raise funds to sponsor additional research.

It’s been a very, very fulfilling way for me to get involved in the lung cancer community and both make a difference in other patients’ lives and then hopefully in the ultimate detection, diagnosis, and treatment of lung cancer as well.

You’re proof of the importance of advocacy and pushing for better treatments

If it wasn’t for this research, I wouldn’t be here right now. I fully know it. I had the benefit of these 2 targeted therapies. Both were FDA approved literally months before I started taking them. Surgery is still a cutting edge thing to do in stage 4 patients.

I can see what difference these research and developments can make for people. I can’t tell you how incredibly important I feel like it is to focus and promote more research.

Top issue #1 in lung cancer research: resistance to treatment

One of the biggest things is resistance to treatment for any type of treatment you have, whether it’s targeted therapy, chemotherapy, or immunotherapy. Eventually, somehow the cancer figures out a way to change — not always, but very, very frequently — and get around the treatment, making it necessary to find a new treatment.

That’s a big issue right now in cancer research. We keep developing new treatments to tackle resistance, trying to figure out what’s driving the resistance and how to tackle it.

There’s also starting to be more and more studies on:

  • Why is resistance happening?
  • What is it?
  • Are there some cells that just can never disappear, that go into a sleep mode, and they’re called persister cells that then pop up later on?
  • What causes that to happen?

That’s a really, really big topic in lung cancer right now.

Top issue #2 in lung cancer research: precision medicine

I think the other really big topic is just an increased use of precision medicine. There are more and more different subsets of lung cancer that have been uncovered, and different types of lung cancer are treated differently.

Not every type of lung cancer responds the best to the same treatment. There’s been a lot done in terms of finding different mutations like EGFR, like I have, but there’s also work being done in terms of immunotherapy and how to find out which are the best candidates for responding to particularly different types of immunotherapy.

I really think that another focus right now that we’re seeing in lung cancer is narrowing down who responds the best to certain treatments so that people who are diagnosed can start with the best treatment right upfront. 

More attention now on rarer types of lung cancer

People are paying more attention to some of the rarer types and subsets of lung cancer, like small cell lung cancer. It’s often very, very deadly but hard to treat.

I’m starting to see a lot more about small cell lung cancer in development. Squamous cell lung cancer is another one. Leptomeningeal disease, which affects the brain and is difficult to treat.

Advances in some of these more difficult-to-treat subsets of lung cancer — those are becoming more and more important and being looked into with increased amounts of research as well.

Final message to other patients and caregivers

The biggest message that I can share is the message of hope, to tell you the truth. Things have changed so much in lung cancer in the 7 years since I was first diagnosed. 7 years isn’t that long in the grand scheme of things.

When I was first diagnosed, immunotherapy didn’t even exist. It was like science fiction. People were talking about it, but they didn’t know what kind of promise that would have. Half of the mutations that are now being tested for in lung cancer hadn’t even been discovered yet.

If you go another decade back beyond my 7 years, all lung cancer patients were pretty much dealing with the same 1 or 2 chemotherapy drugs. In such a relative short time, we have come so far.

This is a good time to be a lung cancer patient. If you end up being a lung cancer patient, there are so many developments, and there are so many new ideas. Patients are living longer and better with lung cancer because of these new treatments. There’s such a potential for more upcoming treatments.

Check out Ivy’s group: EGFR Resisters website


Thank you for sharing your story, Ivy!

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Non-Small Cell Lung Cancer Stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)

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Categories
Alecensa (alectinib) Lung Cancer Non-Small Cell Lung Cancer Radiation Therapy SBRT Targeted Therapies

Stephen Huff Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Stephen Huff’s Stage 4 ALK+ Non-Small Cell Lung Cancer Story

Stephen Huff was diagnosed with non-small cell lung cancer (NSCLC) before he was even 30. In his in-depth story, Stephen, who helps with lung cancer patient advocacy, shares his treatment of targeted therapy and radiation therapy, the stigma of lung cancer and smoking, and family planning after a cancer diagnosis.

  • Name: Stephen H.
  • Diagnosis (DX)
    • Lung cancer
    • Non-small cell lung cancer (NSCLC)
    • ALK+ mutation
  • DX Age: 29
  • 1st Symptoms
    • Shortness of breath
    • Pain while talking (jabbing sensation)
    • Wheezing at night
  • Treatment
    • Targeted therapy
      • Oral TKI drug: alectinib (brand name Alecensa)
      • 4 pills taken twice a day
      • Ongoing
    • Radiation therapy
      • SBRT: stereotactic radiation therapy, also called stereotactic external-beam radiation therapy
      • 5 sessions altogether
Stephen H timeline

Attitude directs you in life and how you view things. It gives you perspective.

It gives you the opportunity to look beyond your circumstances and to help others.

Stephen H.

Table Of Contents
  1. Video: Stephen on Getting Diagnosed
  2. First Symptoms, Tests, and Scans
  3. Lung Cancer Diagnosis
  4. Video: Stephen’s Treatment
  5. Treatment (Targeted Therapy)
  6. Radiation Therapy
  7. Video: Stephen’s Reflections
  8. Reflections (Quality of Life)

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Video: Stephen on Getting Diagnosed

Introduction to Stephen

I grew up in Tennessee. In the Southeast, sports is more than just sports. It’s a way of life. I grew up playing sports my entire life, specifically baseball.

I was fortunate enough to play at the college level and even more fortunate to get drafted by the Chicago White Sox. Sports has been a big part of my life.

There are so many lessons that you learn. You learn about things like work ethic, persistence, all these various things that are tools you put in your tool belt moving forward as an adult.

I love talking about my journey, specifically as it relates to my athletics background. 

I grew up in Tennessee. I live in Franklin now. In my college and professional years, I lived almost everywhere. I think I lived in a total of about 15 different states at one point or another. That was just through sports and traveling!

I am here now. My roots are here. My wife and I have started our family. Everybody always asks if we wear cowboy hats and cowboy boots to work, and we don’t. We don’t ride horses. 

We are the music city. I won’t say we’re the country music city. We’re known for country music, that’s for sure, but it’s a great place to live. I look forward to spending the rest of my life with my family locally here in the Nashville area.

First Symptoms, Tests, and Scans

What were your first symptoms?

I was in a transitional state of my life. After my college baseball playing career was over and I got drafted, I really transitioned myself into a different level of sports, working out, fitness — whatever you want to call it.

When my playing career ended around 2013 to 2014, I joined the rest of the real world in a normal job. I just assumed it was normal to gain weight, get out of breath, and just not be able to do some of the things I was used to being able to do.

I started to notice my very first symptoms in 2015. The reason I can remember is because I was in graduate school and student teaching in Georgia, where I was also coaching baseball.

I began to have shortness of breath. I think because of the timing of the year and all of the things I mentioned before, I just assumed it was allergies or something normal, that this is what happened to normal people.

When I think about it in hindsight, I obviously can self-reflect and say that was the first sign that something was off with my body. 

When did you finally go to the doctor?

I lived with this shortness of breath for some time. I would even get to the point where I could code it, I could keep it discreet, and I could talk around it.

The best way to describe it is I would be talking, and it would feel like someone was jabbing me in the stomach. It would cause me to cringe my stomach up, and I just learned to deal with the symptoms.

Our bodies are so unique and fascinating in that way. Our brains, once we acknowledge something, we can forget about it and continue on. We do this with more than one thing like shortness of breath. We do it with other ailments.

I carried this on for at least a year, possibly two years, until I started to get really, really wheezy. That’s the best way I can describe it. When I would lie down in bed at night, it sounded like there was fluid in my chest.

I remember lying in bed looking at the ceiling, not able to sleep, and my wife said, “Stephen, I really think you should go to the doctor. It’s not normal. It’s beyond keeping you awake at night. Now it’s keeping me awake at night, so I think you should go see a physician.”

What happened at the first medical visit?

Thinking nothing of it, I didn’t even think to make an appointment with my primary care physician. At the time, I had a scheduled appointment, but it was at least around 10 or 11 months away.

I didn’t even think to call and to try and push it forward. What I did was I went to a walk-in clinic. I complained about breathing, and I complained about the wheezing at night. 

They prompted me to get a chest X-ray, which yielded a diagnosis of bronchitis. The nurse practitioner said I had bronchitis, gave me some antibiotics, and said I should be fine.

I distinctly remember walking out of the parking lot, thinking in my head that I’d never had bronchitis, but I was pretty sure it wasn’t bronchitis. It might be, but something inside of me was telling me that it was more than that. 

You scheduled an appointment with a specialist

About 2 or 3 weeks later, I scheduled an appointment with a specialist. I wanted to go see an ENT, or ear, nose, and throat physician. For some reason, I had always thought this was allergy related and thought that was the right physician to see.

When I saw the ENT, he gave me a full examination. He also, along with the fluid in the lungs, could feel a hard nodule above my right collarbone. You know how they do the inspection; they check your neck. That was the second alarm bell.

With insurance, nothing is easy, and nothing is straightforward. I had to do a second X-ray before I could do any further testing. That’s when the ENT doctor sent me to do an X-ray, which yielded nothing except possible pneumonia.

I’m sitting here with a bronchitis and pneumonia diagnosis. I still have no answers, and I’m not getting better.

Self-advocating for more testing to get answers

I called the physician to ask if there was further testing that could be done, specifically with the nodule in my neck. When we have these nodules, bumps, and what have you, we check the internet and try to find as much information as possible, which leads to all of this fear and anxiety.

After reading the internet for several hours on end, I decided that I needed to get that nodule checked. We had an ultrasound. That was the third diagnostic test done.

What happened with the ultrasound and CT scan?

The ultrasound result was inconclusive. I don’t remember specifically getting any kind of negative feedback, but I do remember getting an inconclusive follow-up. It was at that point that we had checked all of the boxes to finally get the chest CT scan approved. 

The chest CT scan is what ultimately threw up the alarm bells, the whistles, the lights. It was the imaging that actually set off the fire alarm for the lung cancer.

How did you get the CT scan results?

I remember that I had gone to Cracker Barrel, which in the South is a very popular restaurant. I was celebrating my first summer as an educator and soaking it in.

On my way home from the restaurant, my phone rang. It was the doctor telling me that my CT scan was not good. They didn’t know what was going on in my chest and my body, but they said it appeared to look like cancer.

When did the possibility of cancer really sink in?

He said I needed to go into his office as soon as possible and drop everything I was doing. I remember distinctly filling out the paperwork, and the last question on there was if I had a living will. That was the defining moment. That’s when it all sank in that this was real. 

That this was not only real, but something life-threatening.

As a cancer patient and survivor, I think the worst part is the waiting because it’s the unknown. That’s when your mind starts to race, and you start imagining things. You have all these ideations of things. 

The CT results yielded a lot of things. Basically, there were several suspicious areas in not only my chest, but also in my abdomen, my neck, and my pelvis area as well. 

That was probably the realest, scariest moment of the entire journey because up until this point, I was in my own brain. This was all arbitrary and miniscule. I was healthy, young, fit, and this was not something that I had taken seriously up until that point.

I’ll never forget, as a new teacher, I had just finished my first year as a teacher. I’m on cloud 9. I’m starting my first summer as an educator, which is the best part of teaching.

I had all of this happen the day after the last day of school. For me, this was a black cloud. It was very traumatic. 

How did you process the initial bad results?

With lung cancer, we ordered a Foundation test, a biomarker genomic sequencing test. It takes 7 to 10 days. That period was a nightmare. I was not sleeping.

When someone tells you you’re sick, sometimes you feel more sick. It was very mental for me in that regard because up until that point, I had been so healthy.

I’d been going to the gym. I was exercising, not as rigorously as I used to, but then I couldn’t. I started to feel sick and feel worse. The combination of those 2 things was really, really hard for me to deal with. 

Describe the ultrasound-guided core needle biopsy 

When they found this nodule in my neck, they sent me to an interventional radiologist. They took an ultrasound remote and did an ultrasound-guided core needle biopsy.

Essentially, they find the nodule and try to get as much tissue sample as possible. When they send that off, the first result that comes back is whether or not it’s cancer, and if so, what kind of cancer.

If it is cancer, they take the remaining core tissues and start the gene sequencing to see the mutation arrangements and the biomarker testing. All of those things can dictate your treatment options. 

The biopsy is not the usual procedure for lung cancer patients

For lung cancer patients specifically, I am a rare case in the sense that I had a lymph node sitting right there on the surface level of my skin that they could access with a needle. Most patients do not have that luxury. Most patients never have that.

The standard procedure is usually called a bronchoscopy, or what they may call a VAT (video-assisted thoracoscopic surgery). They sedate you in an outpatient procedure, go into your lungs, and scrape from the inside of your lungs. You’re asleep the entire time.

I’ve heard that procedure can be good or can have some side effects. I was a rare case in that I had a nodule sitting right next to my neck that they could easily access, leading to a core needle biopsy.

Describe the imaging tests you had to undergo to be staged

A lot happened on June 1st. I received my diagnosis, and I also had to be staged. To do this, they wanted to do not only a PET scan, but they wanted to do a full MRI for the head, neck, thoracic, lumbar, and sacrum.

If you’ve ever had an MRI, you know it is not the world’s greatest experience! I did one with and without contrast. Each section was 15 minutes, twice, so I spent a good 2.5 hours in an MRI tube just to get staged, along with the PET scan.

Describe the PET scan

The PET scan is a little different. They give you the glucose and the liquid form of radiation to spot the cancer. That was a little less invasive than the MRI.

Lung Cancer Diagnosis

How did you finally get the diagnosis?

I was passed off to the oncologist based on something in the ultrasound result. It was still speculation at that point. I didn’t even really know what an oncologist was. I was like, “Is that a specialist?” 

I think that was the safe move at the time. When I got the results from the CT scan, it just further validated that I had a lot going on in my body. 

After we got the results from that CT scan, the oncologist then ordered the core needle biopsy to confirm what that node in my neck was. We did that at the end of May. I found out on June 1st, 2017, that I had adenocarcinoma of the lung, stage 4 lung cancer. It was non-small cell lung cancer, which is the most common type of lung cancer. 

Describe the moment you heard it was cancer

When I went in on June 1st, it was pretty much all set in stone. I had made up in my mind that it was cancer. It was the worst-case scenario. 

The physician presented the treatment options. We talked about treatment, but I don’t remember a whole lot after hearing, ‘Unfortunately, it is cancer.’

It’s such a surreal experience. It’s so hard to remember everything because it’s something you’re not equipped to deal with.

»MORE: Read different experiences of a cancer diagnosis and treatment

You had to wait for the gene sequencing results for the full diagnosis

We still had to wait for the remaining results of the core needle biopsy to see if I had a targetable mutation-driver of my tumors before I could jump straight into treatment.

How did you pass the time while waiting for results?

My advice would be to just find something to occupy your brain. For me, idle hands are the worst. When I sit at home and don’t do anything, I go crazy.

I have to find something to do, even if that means I really don’t want to do it or I’m in the worst possible mood. Just getting up and going for a walk or a hike with my wife, getting my mind off of “what if” or “if this happens” or playing all these scenarios out in my head, it helps. It helps with scanxiety, too.

»MORE: Dealing with scanxiety and waiting for results

Your genetic mutation: ALK+

In lung cancer, there is a pretty short and long list, depending on whom you ask, of how many mutations you can have.

The most common are EGFR and KRAS. Mine was ALK+,which is only in about 5% of non-small cell lung cancer cases. It’s definitely the minority. 

When I heard that, I was not happy because I thought there would be no drugs available, and they’d kick me to the curb. I was shocked to find out the contrary.

When I found out I had this ALK (anaplastic lymphoma kinase) mutation, I learned there are a lot of drugs specifically for the ALK+ rearrangement.

That was so encouraging to me! That was the first encouraging bit of news through the diagnosis. 

How did you process the cancer diagnosis?

It’s going to sound weird, but I think for me, I didn’t want to show weakness. I didn’t want anyone around me to see how much of an impact it had on me. 

Your friends, family, and all your loved ones will halo around you and tell you you’ll be okay. “We’ve got this. Strength in numbers!” You’re like, “Yeah!” I put up this bit of a façade, but inside I was thinking I was going to die tomorrow. That’s how I dealt with it.

It was really hard for me because growing up in sports or in anything in life, you’re always told the harder you work, the better the results. The more you push yourself, whether in the gym or weight room, the more repetitions and time you spend there, you’re going to be successful.

This was the first obstacle in my life where I didn’t have something tangible I could push myself through. That was extremely difficult. 

I love to be the driver of my own car. I love to be the person in control of my life. That was such a hard reality for me to face. One of the things cancer does more than anything is take away the feeling of control in life.

Slowly but surely, it was a day-by-day process for me. Once I got my diagnosis, I immediately hit shock and then denial. I thought, “This is not me. This is not going to happen to me.” 

Then I started to feel bad for myself. That was probably the darkest time. I had a gap of about 3 weeks from the time I was diagnosed to the time I actually started treatment. Those 21 days were extremely hard, the hardest days of my life.

My life had literally been turned upside down in the blink of an eye. I didn’t transition out of that until I started treatment on June 22nd.

How did you break the news to loved ones?

Pretty early, we decided to share with our family and friends, specifically our immediate family. They had been pretty involved, like my mom, my dad, and my wife’s parents. All of us knew of the situation. 

My wife and I waited about a week until we started to tell the rest of our family and friends because when you’re processing something like this, you can never think of the best way to word it, to phrase it. Sometimes you try to give yourself a little bit of time to digest before you start to tell everyone. 

If you do it immediately, you can open yourself up to not being able to fully digest it. It’s an important step. You need to understand your diagnosis and your treatment options. If you skip that and go into the next step, sometimes you can take steps back.

Any tips for others on how to share a cancer diagnosis?

Do it on your own terms. I liked the idea of calling my friends and telling them. I felt a little uncomfortable when people will call me or text me or send me messages. You cannot control that, and people just want to help innately. 

My best advice would be to find a place where you can gather your thoughts and get away, even if it’s to get away from your spouse, parents, or best friend in the entire world.

Go for a walk or a couple of walks. Go somewhere you can gather your thoughts, think a little bit, and think about what you want to say and how you want to say it, because it is important for you mentally to have an approach.

That was my approach, and that was how we decided that we were going to step forward with this.

»MORE: Breaking the news of a diagnosis to loved ones

Video: Stephen’s Treatment

Treatment (Targeted Therapy)

Did you consider a second opinion?

I did not advocate for myself in the beginning because I have always fallen into the mindset that doctors are the smartest, they know everything, and I just listened to what doctors say. I am so grateful for all the amazing doctors we have in this country. 

What I will follow that up with is that it is always a good idea to get a second opinion, even if you don’t think you need one. It’s always a good idea just to get someone else’s advice. I wanted to explore and find out. I wanted to see what else was out there.

Even though there was nothing wrong with my first oncologist, I did get a second opinion. I’m glad I did. The second doctor I spoke with really resonated with me, really spoke things on my level, and helped me understand, giving me so much hope.

If I had never made that decision to reach out and get a second opinion, I think it would have changed my path and my journey. Here I am today, with my same oncologist whom I’ve been with for 3.5 years.

2 oncologists with different treatment recommendations

My oncologist who gave me my diagnosis, who told me to get my port, wanted me to sign up for a trial because before my results had come back, he was almost sure that I was going to be an EGFR mutation. That was based off of my demographics, including age.

He wanted me to sign up for an immunotherapy trial. I felt an immense amount of pressure to agree, to sign up, and to put my name on the paper to get started. I wanted to start. 

When I spoke with the second physician, she was a contrarian. She didn’t think I had the EGFR at all and thought I had the ALK+ based off of what she’d seen in my reports. Thankfully, she was right, because it changed my entire treatment course for the better. 

I love talking about my treatment course because it was something I had no idea about in targeted drugs, as it relates to cancer patients and cancer journeys.

Targeted therapy drug: TKI (tyrosine kinase inhibitor)

As a completely ignorant young adult, I had only assumed that treatment was chemotherapy or radiation therapy. You did both or one or the other.

My oncologist presented the idea of what’s called a targeted drug, specifically a TKI (tyrosine kinase inhibitor). This was something my family and I had never heard of.

This is an oral drug you take twice a day. It allows me to live a completely normal life. I’ve been on this drug for 3.5 years now and still going. I’m actively on treatment.

To know this drug exists is one thing, but to have it impact my life in such powerful ways is something I’m so grateful for, because this drug was FDA-approved just months before my diagnosis. 

It saved my life. It’s truly something I’m grateful for. 

How did your oncologist describe the targeted therapy drug regimen?

For non-small cell lung cancer patients who have the ALK+ rearrangement, there was a first-line treatment called crizotinib approved in the early 2010s. It was the first drug of its kind, and it saved a lot of lives. 

Then my drug, which is called alectinib or Alecensa, is actually a second-line drug that’s FDA-approved for first-line treatment.

The first time my doctor brought up this new drug, she said this would make me feel better within a few days. Of course, I took that as, “There is no way. I don’t know what the world she’s talking about, but there’s nothing that will make me feel better in just a few days.” 

She said I needed to take the drug twice a day, 8 pills in total, and to take them with food. The only thing she said they would do is make me feel a little tired, and I might gain some weight as a side effect. I said, “Sign me up!” 

What are the alectinib side effects?

Knock on wood, I have had little to no side effects.

I’ve been on this drug for 3.5 years, so that’s almost 42 months. I was told, sitting in my doctor’s office, that this drug was so new and it worked for about 34 months.

The cool thing is that number keeps moving as I keep moving. I’m a science project. I’m happy to be a science project because I’m still on the drug, and I’m still here.

Thankfully, I’m probably very lucky in that regard. I know some other patients on the medication who don’t take it as well and have to take a smaller dose. For me, I have had no issues. 

I will say it is a little toxic to the liver, so I have to get my liver tested every 3 months, give or take. I also have to minimize my alcohol, which is probably a good thing anyway. I can still have a glass of wine, but I can’t have 3 or 4, which is a good thing.

You started feeling great soon after starting treatment

I started my medication June 22nd. I have to be honest, I felt amazing after 3 days. I felt like my old self. 

What I mean by that is my wheezing was completely gone. My breathing was back to normal. I didn’t have the feeling like someone was jabbing me in the gut.

I knew then that this drug was working. I could tell it was working. When I went in for my first scan around 60 days after I started the treatment, I had a complete response.

Every tumor on my previous scan had shrunk. Some had disappeared completely. That was the validation I needed that this was working, it would work, and that I have a real chance to beat this.

You were able to go back to work

I started teaching again in August. We start school the first week of August, so life continued. In the South, we start school in August. We don’t wait until Labor Day.

Managing the cancer like a chronic disease

That’s the best way to describe it: I’m dealing with it like a chronic illness. When I was first diagnosed, I had to wrap my brain around this idea of chronic disease. 

I’ll explain it in the best way I know possible. Growing up, the only thing I knew about cancer was that you want it out of your body. It needs to be gone completely, cut out surgically, whatever.

When my physician told me because I was stage 4 and because they’d seen cancer spots not only in my lungs but other places like my liver, my spine, my sacrum, and my chest lymph nodes, surgery wasn’t really an option. 

Surgery may be an option some day down the road, but for the time being, my oncologist wanted me to not necessarily think that just because the cancer was still in my body. It was wrecking my body.

She said I could live with it. If they could keep the tumors under control, keep them from growing, and keep them stable, I could live a completely ordinary life. I agreed that was a good option when she put it in layman’s terms like that.

I view my disease as a chronic illness that we manage. I hope someday I may be a candidate for surgery or may have some various options, but for the time being, I’m completely satisfied with where I’m at in my treatment.

Paying for the alectinib

When I got the bottle in the mail, of course I had done research and tried to find out everything I could about this alectinib and what it was. I found out that it’s not cheap at all. It is about $11,000 and $13,000 a bottle if you were paying out of pocket.

I’ll be the first one to admit that being a teacher, we have great insurance, and that’s part of the deal. I’m very, very blessed in that regard. I have a max out-of-pocket, which I hit every year. I typically hit my deductible in January, depending on when my first oncologist visit is.

Thankfully, all of my testing was covered. The only thing I can remember that was not covered up front and right away was the foundation biomarker testing. That was simply because my insurance provider hadn’t had a negotiated agreement.

We’re talking about new, innovative testing that can dictate the long-term survival of patients that isn’t necessarily set up yet. We’re still learning about all the genomic sequencing. Thankfully, my insurance provider did end up covering that because that was very expensive.

In the end, I have a small copay of a few dollars for my pills, and it comes every month. I get a call from my pharmacy. They ask me how I’m doing and if I’m ready for a new bottles of pills.

Advancements in lung cancer treatment

In lung cancer specifically, there have been more advances in the last 5 years than there were in the last 50 years. That is so amazing to me.

Anywhere and anytime I can talk about treatment options as it relates to lung cancer in general or just cancer treatments in general, it’s so encouraging. 

There’s so much hope. There’s so much to be hopeful for. To think if I were diagnosed 6 or 7 months before, I may or may not have gotten the same drug that I had gotten since. 

It makes me even more grateful, so for newly diagnosed patients, whether you’re lung cancer or other various cancers, just take all the old numbers and throw them out. 

All the new numbers aren’t reflected yet in terms of what these new treatments can do, specifically targeted drugs and immunotherapies.

Radiation Therapy

When did your oncologist suggest undergoing radiation, and how did she characterize the treatment?

I had a tiny nodule that appeared to be slowly growing. The growth was so slow. It was something like 1 millimeter every 3 to 4 months.

After several months, maybe even a year, of surveillance, we decided to radiate the single node with 5 rounds of SBRT. The radiologist recommended that we radiate the primary or largest tumor as well due to the proximity.

Describe your radiation therapy regimen

I had 5 sessions in total, around the same time every day. After the initial scan to pinpoint the location, my body was marked up with stickers and dots. These were to align me in the exact position for every session.

The only thing that I can remember about the radiation sessions was expecting a laser to drop from the ceiling, similar to something from a James Bond movie. That was not the case!

The treatment itself was relatively quick, less than 10 minutes. Setting up took the longest. My arms would fall asleep from holding them above my head for the entire duration.

It is such a precise therapy, down to something like half of 1 millimeter. The setup needs to be perfect before hitting the big red go button.

What were the SBRT radiation side effects?

Relatively none for me! I did have some fatigue initially, but I did not experience any short-term side effects aside from that.

I did, however, experience pneumonitis several months after the SBRT. Pneumonitis is exactly like pneumonia but without the infection. It is inflammation of the lungs. Each ensuing scan did show scaring and eventually fibrosis.

Around 16 months after this SBRT treatment, my right-middle lobe did eventually entirely collapse. This full collapse is because of the scarring, but it is not as bad as it sounds because we have several lobes, and other lobes will expand to make up the difference.

I cannot tell a difference that I am one lobe short and still very thankful to have several other healthy lobes.

Any guidance on getting through SBRT?

It is not as scary as you may think. I think we are apprehensive about the unknown. For me, that was this preconceived notion that a laser will burn me or cause long-term damage, but my experience was pleasant.

I am still amazed at the precision of these machines. I would highly recommend SBRT to any patient that is considering this as a treatment option.

»MORE: Read other patient experiences with radiation therapy

Video: Stephen’s Reflections

Reflections (Quality of Life)

Being your own advocate as a patient

Sometimes we fall into the mindset that this can’t happen to us or that’s not going to happen to me. For me personally, there’s a self-defense mechanism. When I read about people who are dealing with severe diseases or anything, I tend to distance myself. I put up a halo. I don’t believe it’ll happen to me. It’s not me.

When I started to become symptomatic, I immediately thought nothing was wrong. I kept telling myself that over and over and over. But I knew, deep down, something was a little off in my body.

If I had swallowed my pride, if I had not been afraid of what the actual diagnosis or prognosis would’ve been, I could have probably given myself a little bit better of a position in dealing with lung cancer.

When I could remember those first symptoms, I think about that a lot. What if at that time it was still early stage? What if it was stage 1 or 2, and it was operational? How would that have changed everything? Of course, you can drive yourself crazy doing that as well.

Take that with a grain of salt, but the most important advice I can give to anyone in terms of self-advocacy is that nobody knows your body better than you. It’s so important to seek out answers.

If you don’t like the answers you’re getting or you know they’re not right, try to find someone else.

Walking out of the parking lot in January of that urgent care center, I knew I didn’t have bronchitis. I knew something more was going on there, but at the time, I let the voice in the back of my head not speak up. If I can give anyone advice out there, it’s to step up and find answers. Don’t give up.

»MORE: How to be a self-advocate as a patient

Dealing with the stigma of lung cancer

I love talking about this because being a teacher gives me the opportunity to inform someone who might not be aware of some of these stigmas.

When I was first diagnosed with stage 4 lung cancer, in my own head, I thought I was the bill of health. I was 29 years old. Up until that point, I had always taken care of my body. I had never smoked or anything like that, so to get a cancer diagnosis was so shocking.

To get a lung cancer diagnosis was insane. Completely out of left field. I just assumed because of my demographic, everyone would know it was a freak accident.

Well, that wasn’t necessarily the case. What I mean by that is typically when I share with someone my journey about lung cancer, their first response is, ‘Did you smoke?’

I have no problem with someone asking me that because it gives me the opportunity to educate, but I think that question presents a stigma. We have always been told that you get lung cancer from smoking, that smoking is the only cause of lung cancer, and if you don’t want to get lung cancer, stop smoking or never smoke.

The reality is between 30 and 40% of newly diagnosed lung cancer patients are either never-smokers or have quit for a long, extended amount of time. I think there are a couple different narratives we need to change.

One, we need to change the narrative that lung cancer is a smoker’s disease. We need to address the fact that if you have lungs, you can get lung cancer. Even young never-smokers or not-smokers still get lung cancer.

The second narrative we need to address is that no one deserves lung cancer! It sounds silly, but no one deserves any type of cancer. Even if someone does smoke, I don’t think it’s right morally for me to say that they brought it on themselves. 

As anyone who’s in the health industry knows, yes, tobacco is the leading cause of lung cancer, but it’s also the leading cause of other cancers and can contribute to other cancers, as well as other diseases, including cardiovascular.

When you go in to get an EKG or you’re a diabetic, you’re not scrutinized. You’re not asked whether you smoked or, “Did you bring this on yourself?” The narrative needs to shift.

As a human race, we need to empathize with lung cancer patients. We need to say, ‘Whether you smoked or not doesn’t matter. ‘

We just need to support you, and we need to understand that lung cancer patients need research and treatment options, just like every other cancer patient does.

How was it being an adolescent young adult (AYA) cancer patient?

The first thing I did was I scoured the internet trying to find some stories of hope. I wanted to see someone beat lung cancer, and it’s hard.

It’s hard in our lung cancer community to find those things, or maybe it was when I was first diagnosed. It’s getting much better. The reason is when you look at the statistics of lung cancer, specifically late stage or stage 4, it’s not very encouraging.

When I was diagnosed, I was told the survival rate was about 16%. When I heard that, that was very discouraging for me. That was about 4 years ago.

Now, it’s already up to 21%, which is highly encouraging. It’s not where we want it, but it’s great. It’s because of these new therapies and new drugs. 

When I think about a newly diagnosed patient and advice I could give them as far as finding a community, there’s a lot of great resources out there now for lung cancer that weren’t available when I was diagnosed.

Finding those resources, which can be located on various lung cancer nonprofits, but also finding a group or individuals who have walked the path. For me, that was through social media. 

If I can see someone has done something, beat a cancer, or they’ve lived 5, 10, 15 years with cancer, that gives me hope.

I can ask myself, ‘If they can do it, why can’t I do it?’ I think that speaks volumes to the mind, the mental game of beating cancer.

How did you plan for the future (family) while dealing with a late-stage cancer diagnosis?

One thing I love to talk about in my journey is starting a family. Receiving my diagnosis, talking about my medication and my treatment options, the last thing on my mind was starting a family.

My oncologist, whom I love dearly, told me she wanted me to think about the option or at least have the option to start a family, because once we started this drug, I wouldn’t be able to naturally conceive.

I looked at her like she had 3 eyes. I was like, ‘You think that’s what I’m thinking about right now? All I’m thinking about is living tomorrow. I just want to make it.’

My wife and I went home and talked about it long and hard. It was something I didn’t have any interest in, but I am so grateful that we made the arrangements. 

About 2 years into my journey with lung cancer, after several good stable scans, life started to feel much more normal than I would have ever expected. I think it’s because when you are handed a diagnosis, your life just flips upside down. 

Doing things that got me back into a routine, like work, traveling with my wife, doing family get togethers, and going and doing things with my friends, slowly but surely I started to feel normal again. I got to a point after 2 years where I felt normal enough to explore the options of starting a family.

Thankfully, I am so grateful that I did. If I had been as stubborn as I was with my diagnosis and I didn’t have someone advocating, I might not have had the chance to make those arrangements.

We welcomed our son into the world, scientifically, through IVF in January. He is healthy, he is happy, and he is the light of our worlds. 

Stephen & Family
Describe how you approached fertility preservation 

Right before I started taking my targeted drug, alectinib, my oncologist said if I wanted to eventually start a family, I wouldn’t be able to while on the medication.

She highly recommended I go to a fertility clinic and do the sperm bank just to have the option down the road.

»MORE: Fertility preservation and cancer treatment

That’s when my wife and I went home and discussed it. I was not into the idea at all. That was the last thing on my mind. I was so angry that I couldn’t even think about it.

Thankfully, I let it sink in for a few days, and I did it because my wife was advocating. She said she knew it was something I didn’t want to think about right then, but she really thought we should do it. And we did.

My son is technically 3.5 years old! The really cool thing about the IVF process is when they create the embryos, we have multiple viable embryos. We still have a couple that down the road, if we decide to make another addition to the family, we have that option.

»MORE: Read a patient’s detailed IVF journal

What does survivorship mean to you?

Survivorship to me is not letting cancer win. What I mean is not necessarily winning in terms of where it is in my body or if it’s growing. I mean winning by taking away the joy I want to live my life with.

Every second that I spend thinking about, ‘What if? How will this affect me? What if this gets worse?’ is the second I’m letting cancer win.

By focusing on all the things I want to do in life and how I want to live, being a happy, loving father and husband, being a joy in life, that’s winning. That’s survivorship to me. 

If I’m having a bad day or feeling down, I get out of the house and do something. I hit the reset button. It’s okay to cry. I tell people that all the time.

It’s okay to feel bad and cry, but you have to get out of it. Flip the switch at some point to stop feeling sorry for yourself, and turn adversity into an opportunity.

I try to turn adversity into an opportunity to be a light, share my story, to advocate for cancer and lung cancer specifically, and live life for the fullest.

Last message to patients

My last message would be that for me, personally, my cancer diagnosis in a weird, obscure way was a gift. I wouldn’t give it to anyone and wouldn’t wish it upon anyone else, but the only reason I would call it a gift for me is because it has helped me recognize and appreciate life much more so now than I ever did before I was diagnosed.

For that, I am so grateful because I try to live every day as best as I can. My diagnosis brought that out in me. For newly diagnosed or people who’ve never been diagnosed, don’t wait for something like that to happen to you, to live that way, to live the way you want to live.

I tell my school kids every day a saying we put on the wall. It’s corny and cliché, but it’s so important to me. It’s 3 letters: A, I, E.. It stands for “Attitude is everything.”

To me, attitude is the most important thing in life. Like Henry Ford said, whether you think you can or whether you think you can’t, you’re probably right.

That resonates so well with me because attitude directs you in life and how you view things. It gives you perspective. It gives you the opportunity to look beyond your circumstances and to help others. 


Thanks for sharing your story, Stephen!

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Non-Small Cell Lung Cancer Stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)
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Categories
Alimta (pemetrexed) KRAS Lobectomy Lung Cancer microwave ablation Non-Small Cell Lung Cancer Platinol (cisplatin) SBRT

Terri’s Stage 3A Relapsed KRAS+ Non-Small Cell Lung Cancer Story

Terri’s Stage 3A Relapsed KRAS+ Non-Small Cell Lung Cancer Story

Terri shares her stage 3A KRAS+ lung cancer story, including experiencing 3 separate recurrences. She persevered through multiple treatments, including chemotherapy, surgery (lobectomy), and different radiation procedures, to getting to no evidence of disease!

She decided to take the feeling of helplessness and shift it into dedication to patient advocacy. Founder of nonprofit group “KRAS Kickers,” she also dives into what patients and caregivers should know, as well as how she navigated her own cancer experience. Terri touches on how she broke the news to loved ones, handled parenting with cancer, and the importance of connecting to a cancer community.

Terri Conneran timeline
  • Name: Terri Conneran
  • Diagnosis (DX)
    • Lung Cancer
    • KRAS+
    • Stage 3A
  • Age at DX: 55 years old
  • 1st Symptoms
    • More trouble breathing
    • Fluid in lungs
  • 1st-Line Treatment
    • Chemotherapy
      • Alimta & cisplatin
    • Surgery (lobectomy)
    • Chemotherapy
  • 2nd-Line Treatment
    • Microwave ablation
  • 3rd-Line Treatment
    • 15 rounds of SBRT radiation
  • 4th-Line Treatment
    • 15 rounds of SBRT radiation
Table Of Contents
  1. Terri’s Story on Video
  2. First Symptoms & Tests
  3. Lung Cancer Diagnosis
  4. Treatment Decisions
  5. Chemotherapy & Side Effects
  6. Surgery (Lobectomy)
  7. First Recurrence
  8. Second Recurrence & Radiation
  9. Third Recurrence
  10. Patient Advocacy
  11. Non-Small Cell Lung Cancer (NSCLC) Stories

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Terri’s Story on Video

How I Got Diagnosed
Chemo, Surgery, Radiation
What Patients Should Know

First Symptoms & Tests

Tell us about yourself outside of cancer

I live in Charlotte, North Carolina, and transplanted here from Arizona and from the Chicago suburbs. I have 3 kids that are all adults and an amazing husband. We play some games and like football. We like to just hang out and enjoy life.

What were the first symptoms?

The thing is that when you look back, historically, it makes a little bit more sense. When you’re going through it, you just think, “Oh, it’s an allergy. It’s like a cold.”

I’ve had asthma intermittently throughout my life. I went back and forth to the doctor several times, and she’s like, “You try doing over-the-counter stuff.” We changed up my asthma medication, and still, I was really struggling.

We spent quite a bit of time at the beach, and it just reached the point where the humidity just was oppressive. We went back again to the doctor. Like every other busy mom, you just push things off and push it off.

Finally, I went back to the doctor a couple of days before Christmas in 2016. By then, it had turned into full-blown pneumonia. She could hear the fluid in my lungs and treated me with antibiotics.

We did an X-ray at that point. Fortunately, from the X-ray, which is not a really good diagnostic for lung cancer, the fluid showed up. It highlighted the tumor that was in my lungs. We followed up with a considerable amount of testing.

When did you realize things were serious?

When they could see the fluid, it made more sense. We went back there and saw what she was talking about. You could very clearly see there was something inside the lung.

At that point, because cancer runs in my family, I was totally convinced it was probably cancer, but I was afraid to say those words.

My doctor said results would come right back in 10 days. That’s when we went back. When I wasn’t feeling better by the 1st, I knew for sure something was completely wonky. Then we saw the pulmonologist and went through a long diagnostic period.

I had no idea the difference between an X-ray or CT or a PET scan or any of that. You don’t find out until you need to know. It’s really important to understand that.

Describe the CT scans

Initially, I went back and had a CT scan, and it was just very simple. You just laid on the table, and the machine did all the work. There was no prep.

They could still see there was something going on. In order to prove to the insurance and all the other powers that be that we needed to extend testing past that, I had to do another CT scan, where they injected some dye into me,

It’s a couple of hours, and it’s simple stuff. Just lying there, the machine does all the work, nothing hard, nothing painful, very quick, very painless, except for the stress around waiting.

Describe the PET scan

The PET scan is a little bit more extensive. That’s where they do a whole-body scan, basically from the neck down. You have to do a certain amount of fasting, not eat sugar, and eat all high-protein items, because they inject a special sugar inside of your body to be able to find any sort of metabolic activity, which would be something that would be indicative of cancer.

The waiting around and having the test is very stressful.

Did you deal with scanxiety waiting for scan results?

The scanxiety doesn’t really hit until later. Now, doing follow-ups, and I’m 4 years down the road. Then you’re not even sure what you’re waiting for.

When you’re first diagnosed, I think that it was really a very stressful time for me, as it is for most people. You don’t know what’s coming; you don’t know what’s next.

You’re not really sure what you’re waiting for. Am I waiting to hear that there is something there or there’s something not there? What am I waiting to hear? What am I even hoping for? It’s not like you know the rules to this game.

It is stressful, and it is hard. How do you manage it? It’s like anything else. You’ve just got to do what you got to do. You want the right results, and you want to get the right information. The important thing is getting it done so you can see clearly what is there.

Describe the biopsy

It varies based on where the cancer is in your body. Mine was lung cancer, so that’s the part that they had to go into. Not all lung cancers are as easily accessible as mine was.

Relatively speaking, it wasn’t as bad. I thought of my lungs like balloons, and I was really concerned that they were going to pop, to be honest with you.

They don’t, because there’s fluid and there’s other things around it. It was a little bit of prep, and I couldn’t take certain things for several days. I went into the hospital, and it was just a several-hour procedure.

They stuck the needle in where they needed it to go. I got a little whacked out on the cocktail stuff they gave you, and that was it.

Was there any pain post-biopsy?

It wasn’t horribly painful. It was just a little bit tender, a little bit sore. It was relatively easy. 

When did you get the biopsy results? 

My doctor was able to call me back within 48 hours of the test to let me know the results of it. He offered to either give them to me on the phone or to have me for an office appointment. I’m not much for waiting. I already felt like I waited quite a bit.

Lung Cancer Diagnosis

Describe the moment you got the diagnosis

I was like, “Just give it to me. I want to know.” He told me that it was a non-small cell adenocarcinoma. That’s what I knew on a Friday.

Even if you suspect, even if you know, even if you believe, hearing somebody actually spell it out for you is still a moment that you just stop. It’s kind of that out-of-body moment, like being in a car accident or something.

You can remember that moment, that feeling. I don’t know what I was expecting to hear. I wasn’t surprised, but he was talking to me, and it was in some sort of weird dream.

You can just remember where you’re sitting and how you feel. At one point, I turned to my husband. I said, “Well, you weren’t there.” He’s like, “Yes, I was there.” Because I was so in my own head, all I could remember is just this one place, this one moment, this one thing right there.

It was intense. Not going to lie. It was intense. Now you hear it. Now you know.

Now what? 

How did you process the lung cancer diagnosis

It’s really the closest I have ever been hit by a train, but that’s what I imagined it feels like. I’m looking at it this way, the train hits me out of here, and now what?

Definitely, you’re confused. Now it’s a legitimate diagnosis. It’s not all in my head. It’s not just a cold. It’s not whatever I did or didn’t do. I can’t fix this with kale or exercise. I have a diagnosis, and now what?

The next morning when I woke up, and I guess I was going into shock. You’re not really sure what is, and what’s not. It’s like you try and steady yourself.

I went downstairs first thing in the morning. It was just so heavy, and I couldn’t breathe. I’m thinking, “I must be having a heart attack. It must just be the stress of the whole event.”

I couldn’t get that anxiety to leave. In fact, it was more than anxiety. My husband, bless his heart, was like, “You have to go to a doctor.” I’m like, “I don’t want to go to the doctor. I’m going to just wait.” He’s like, “No, you really need to.” We negotiated back and forth, and I ended up back at the emergency room. I was not doing really well.

Describe the ER visit

My lungs had filled up from fluid, and I was essentially drowning. That’s why my chest was heavy and hurting. In my mind, it’s still a moment of shock, and so I’m convinced that it must be stress. It must just be the anxiety of it all, of being in the hospital.

Then they had to take some of the fluid out of my lungs, which is not an unusual situation with some sort of pneumonia. It isn’t a horribly painful procedure, but it is life saving.

We went through that over the course of the weekend because now I was a brand new diagnosed lung cancer patient, and those words still couldn’t fully come out. It just didn’t come flooding into my mind at that point. We went through and met a whole medical team at that point.

Treatment Decisions

How did you decide where to go for treatment?

Because of the way it happened with my lungs filling up and not doing well, I just went to the hospital that my pulmonologist and my normal PCP were at. It’s not a major research cancer.

They treat cancer patients. It’s what they consider a hybrid. It’s part of a bigger system. I just went there because that’s where I always go for my health care needs.

It wasn’t something researched. I had trouble breathing. I went to the hospital, and that’s where I was. That’s where I met the team and met the oncologist and what have you.

While I was there, they were just into the process of setting up tumor board for the upcoming week. I was the last slot to slide into the lung cancer tumor board, which they do only every other week. I was very fortunate from that standpoint.

All the doctors from all the different disciplines — the radiologist and oncologist and all the different portions of it — go through your case and look at all your factors, including your age, your health, how things are, where things look like, what they are, and what are the next steps. It’s not just a one-and-done event.

Describe meeting your entire medical team

The way my clinic does it is they bring you in as a separate appointment through the hospital setting, and all the doctors from the different disciplines come to you. You have one appointment, and they come to you.

On that same day, my family was able to meet the radiologist, the oncologist, and the nutritionist, which I can’t even remember — a host of all of them. I was also able to meet a nurse navigator to help me answer questions.

Tip: Seek out a navigator or social worker for quality-of-life questions

When you’re in to see the doctor, you want to ask the important doctor questions. You don’t want to feel like you’re wasting their time or your time, and you want to get more specific information.

At my hospital, there’s someone called a nurse navigator. Sometimes it’s under the social work. Sometimes it’s under some supportive care network. For others, it might be called community care.

They have different names, but all have the same meaning. The nurse navigator was able to point us into service areas, whether it was a support group that we needed, financial assistance if we were looking for it, understanding next tests.

She really was just a wealth of info.

It was like if I needed a mom to go to. Maybe it’s because my nurse navigator, Phyllis, was so amazing that I was just really fortunate, but I looked at her like a mom or the older sister whom I could lean into.

Maybe she personally hadn’t been through it, but she could point me in the right direction. That was really helpful. She really does an amazing job, because she could help you.

If somebody says, “Well, you need to come back in 3 months,” but your doctor says, “You need to come back in 3 weeks,” there’s a disconnect. She can then help you figure out how to get that straight and work behind the scenes in the administrative red tape that needs to be resolved.

Guidance on how to navigate the overwhelm of appointments

If you don’t understand, have them explain it to you. Yes, write it down. Bring other people with you. We had 4 people smashed in a little room. Each one of my kids was asking totally different questions, things that I never would’ve thought to ask.

At the same time, it wasn’t just that they got the information, but I had them to ask later because I wasn’t necessarily hearing everything I needed to hear at that moment. It was just a wealth of information, a wealth of knowledge, and you’re trying to take it all in.

Physically, you’re not on top of your game. It’s not like you went into this, and you’re all revved up, ready to go. You’re not feeling any good.
It really makes a difference to take the notes and ask the questions.

The more I look back at it, I wish I felt less threatened to ask the questions, because the doctors and the team want to explain it to you, but they don’t know what you do or don’t understand. You need to be willing to ask them.

Did you get a second opinion?

Looking back, I wish I did get a second opinion. At the time, it was, ‘You just have to do what you have to do.’

It’s like when you’re driving a car and you see, “Either I’m going to smash into a tree, or I’m going to run over the kid. I’m better off hitting the tree than I am the kid.” You’re just trying to manage what it is you’ve got going on. It’s just so much.

We didn’t have the benefit of amazing shows like this, where you can listen and get other ideas, because when do you get the questions? It’s 2 in the morning when you can’t sleep.

You don’t get the questions during the day, when you can call somebody at 2 in the afternoon. That’s why I talk about this, because I want people to understand I didn’t do it right.

I didn’t do as many wrong things as I could have done, and I was very, very fortunate. Learn from the experience, take that knowledge, and ask the questions. Understand the answers. If you don’t understand them, ask again.

How did you break the news to loved ones?

I don’t think there’s any way that you can easily tell your family any bad news, regardless of what it is. Telling them about cancer, telling them that I was sick — they saw that I was sick. They just still weren’t convinced it wasn’t totally pneumonia.

As the pneumonia turned into something a little bit more severe — when I was put into the hospital that weekend from being filled up with fluid in my lungs — there was no turning back.

They had to know, and they had to know then. Even at recurrence, it’s still utterly the hardest thing, and I have to tell them because there are just no easy words. There are no easy words.

»MORE: Breaking the news of a diagnosis to loved ones

Any guidance on how to share the news with your children?

No, I think you have to speak to the person. How my son is going to hear it, because he’s an engineer and he thinks that way, is completely different than my daughters.

One hears it more analytically, and the other hears it much more as a personal, emotional thing.

You have to speak to the person and the age. When there were other difficult conversations through their lives, how did they respond to it? Was it better in a group? Was it better individually?

As my kids have become older, I see that it’s better if I tell them all at one time, as much as I’m afraid that they’re going to turn on me, because it’s hard. That’s mostly because I don’t want one to know before the other one does. 

»MORE: Parents describe how they handled cancer with their kids

Describe the treatment decision path

Initially, the plan was to do surgery and remove my whole left lung. It was called a pneumonectomy. In the meantime, my tumor samples were sent out for what I now know to be biomarker testing. They were looking for some genetic, genomic mutation marker to see what was going on inside of my body.

It took about 2 weeks to get the results back. It was 2 days before I was supposed to go in to have my lung removed, and the doctor reached out to me and said, “We’re not going to do that. Instead, you’re going to do chemo. We’ll see how you respond to chemo. From the chemo, we’ll probably just remove one lobe from your lung if you respond well to it.”

They show you a piece of paper, and something is circled on it. You don’t know what you’re hoping for. You’re hoping, “There’s something; there’s not something there. What does it all mean?”

In my particular case, they were talking about the PD-L1 level, which is indicative as to how you’re going to be responding to immunotherapy, which was just starting to come online at that point 4 years ago.

Based on that, they decided that I was going to do some chemo, so they calculated out the correct chemo cocktail for me. I did 3 rounds of chemo.

After the 3 rounds of chemo, I was responding well to it, and we were able to just remove one lobe of my lung. We removed the lower-left lobe of my lung.

Chemotherapy & Side Effects

Describe the preparation for chemotherapy 

I went in and had a port put in, which they put up here. They didn’t let me pick where the port went.

I had mentally and emotionally prepared to have my whole lung removed and had gone through all the testing around it. They send you through breathing tests, where they put you in this soundproof booth thing, and then they have you breathing in and out of a tube.

I was mentally and emotionally prepared for that, so when they hit me with another direction, it was all over again. I didn’t know how to react. I didn’t know what to think.

I wasn’t quite sure if this was good. Was this bad? I don’t even know what it was. It’s very stressful. For anybody to tell you it’s not stressful and, “Well, don’t worry, it is what it is.”

No, it’s stressful, and waiting is hard.

You had a lot of mental reservations before chemotherapy

My mom had breast cancer and went through radiation in the 90s. She also went through chemo. She had a mastectomy. I was scared to death.

I was afraid it was going to hurt. I was afraid of what was going to happen. I didn’t want to lose my hair.

»MORE: Patients describe dealing with hair loss during cancer treatment

My youngest was about to graduate from college. I was really scared, and I did not need to be scared. I really shouldn’t have been scared. I wish I had reached out to somebody and asked.

I wish I had the guts to ask my nurse navigator. I wish I had reached out to somebody who had been through the lung cancer community. I wish I knew where to go to get that information.

Describe the chemotherapy regimen

I had Alimta, and I had cisplatin. Cisplatin is a type of drug. It’s platinum-based, and it’s old-school as far as chemo is concerned. It’s also known to cause some hearing problems, and so prior to going in for any sort of chemo, I had to go in and have a hearing test. Cisplatin will give you tinnitus, and you can actually get pseudomonas (infection) as a result of it.

My chemo lasted around 8 hours. I had to do blood tests for a couple of days beforehand to make sure everything, my liver and all these functions, were all right, and then I got jacked up on some version of steroids.

I had to take a certain course or certain medication leading up to it, and then they clean up the port and then infuse it.

The biggest fear I had was the infusion needle was going to hurt going in. I’m here to tell you it didn’t hurt. I sat around and watched TV. It was really quite comfortable. I wasn’t even cold. I didn’t even do chemo right. I wasn’t even cold like in the movies.

Where did you get the chemo infusions?

It was a clinic just specific for chemo and infusions. They didn’t do just chemo infusions, but also blood transfusions. It wasn’t just cancer patients.

Describe the chemo side effects

I kept gaining weight. I was hot. My hair didn’t fall out. It got thinner, and I kept gaining weight. It was about 3 weeks between each cycle, and so I would go in on a Thursday. Then 3 weeks later, I’d do it again.

I didn’t feel lousy at first. Day 3 or day 4 is when I really felt miserable. From the movies, I was completely convinced I was going to be throwing up. I wasn’t throwing up.

I didn’t feel on top of my game, I’m not going to lie. It really wasn’t like in the movies, and it wasn’t like it hurt going in. I was really, really afraid it was going to.

When you feel lousy like that, and then every time you go, going and doing it again, it gets a little hard. You know what to expect; you know what’s going to happen. You come home, and you think you’re fresh.

This picture was after chemo cycle number 2. Do I even look sick? This is not my Julia Roberts moment from the movies, where she’s throwing up over the toilet.

This is a couple of hours after the second chemo I had. My daughter had just gotten a puppy and brought it over for us to take a look at. I was all jacked up on steroids, and so I didn’t feel that horrible.

What helped with the side effects?

The funny thing is that all those things that your mama always told you to do like try and sleep well, drink lots of water, and exercise — those things are really important to try and do during chemotherapy.

Even though you may not be running a marathon, you can drink water and stay hydrated. You can try and move around a little bit, because it does help your body to feel better.

How did you respond to the chemotherapy?

I responded very well to the chemo. Their idea of very well doesn’t mean that I felt like running a marathon, but it does mean that it was going to kill the cancer. That was good, but the cancer wasn’t completely gone. 

Surgery (Lobectomy)

What was the plan with surgery?

We found that I was responsive after doing a scan. Based on that, we went in and just did just the lobectomy. My youngest one graduated from college, so we delayed things a little bit so that I could attend her graduation.

I had the surgery done in May of 2017. I was in the hospital for around 10 days.

What was the staging?

Initially, when I had that fluid in the lungs, the doctors were very concerned that it might be stage 4. They were presuming that it was going to be stage 4 until all the tests came back with the biomarker and reading the fluid.

The results came back, and it wasn’t metastatic. That’s when they determined that it was stage 3. 

What are the questions you think are important that you wish you would have asked at the time?

I wish I had actually asked for the full biomarker testing to see what their report was and ask questions about it. Cancer runs in my family, but I had done genetic testing. I didn’t understand this was different testing.

This is testing that is based on the genomics, the mutations within the actual pathology of your cancer. It’s not necessarily germline what you get from your parents, from your DNA. That’s not what they’re looking for. I wish I had that.

I was very fortunate. I ended up with a great system and a great doctor, but I do wish I had thought like a researcher, somebody who was specific to lung cancer, specific to that particular area, because there’ve been so many advances in lung cancer.

In particular, the last 5 years, it has changed so much and so dramatically that a lot of doctors are not current on the treatments at all.

I really wish I could have done that sooner. Even if we stuck with the same program of attack, I do think it would have given me more confidence that things were going to be going on better.

The first thing I wish I would have done is to not have been afraid to ask the questions.

If I didn’t understand, pursue it a little bit more. If that means getting involved with somebody, like maybe do phone buddy stuff, or with one of the big organizations, or reading and watching these shows, that’s really what it takes to get that information.

Describe the prep going into the surgery (lobectomy) and what you remember coming out of it

We hadn’t really talked too much about what we were going to do after I did the lobectomy. We met with the doctor and with my medical team. I went into it really excited because it really felt like I was doing something.

I was physically removing this cancer from my body.

It just really felt like it was the first time I had any power over it, as opposed to just picking stuff in my body unaware and afraid that it wasn’t going to work, not knowing what was going on inside of my body, except from these scans. It really gave me much more power.

As far as the prep going into the lobectomy, honestly, I kept thinking it’s the waiting that’s just brutal. You get yourself so jacked up in your head, like, “What’s going to happen? What might really fix this? What about this? What about that? Do I have my will done? Do I need my will done?”

These are all really important issues. These are probably things that we should have taken care of way before I got sick. This is just something we should normally take care of as an adult, but you don’t really think about until you get a really serious diagnosis.

Any guidance for others on recovery from surgery?

They have different approaches to how you handle a lobectomy now. Now it’s getting a little bit more common to be able to do what they call wedge resection, or just go in and just take out a piece of it or a portion of it.

In my particular case, they had to go in and cut me in a V across my shoulder blade. They could go in, and I could get victory over that cancer. They went in, they cut that out, and then they took out the cancer.

I was in the hospital for around 10 days. I woke up, and I wasn’t mentally prepared for the juice coming out of me. They didn’t really hurt, but I was surprised. It just didn’t cross my mind to ask the question, “What am I going to wake up with?” I just didn’t know. I knew I’d be in the hospital for around a week.

What was the recovery like?

Lying in a hospital, eating their food, watching their television. The only time that they have anything for you is in the middle of the night when you’re trying to get some sleep. Every other hospital is just like that.

How long was recovery at home?

All the wonderful people that I have in my life — my Bible study ladies, my friends, my family, the neighbors, and people in my house that I work with — also were very helpful.

The insurance company was reaching out to me, and somehow it really became overwhelming. It felt like I needed a secretary to take care of all of it.

It reached a point where I had to say, “Thank you,” and then just not respond so then I could recover. Otherwise, it felt like I just kept saying the same thing over and over and over again.

That is something to be warned about. As much as they love you, take your space so that you can recover. I was just lying on the couch, or I was lying in bed. I was at home, and I was recovering and watching TV. Zoning in and zoning out is what you do when you’re not feeling that great.

You feel bad. As far as things I had to do, I had this little breathing apparatus, a spirometer or something. You had to blow this little ball in there, fill up your lungs.

At first, it was uncomfortable, but the more that I did it, it felt like I needed it. It felt like a good burn, a good exercise, like when you get the good stretch. It really felt like it was starting to really stretch well. That was helpful.

I just wanted to start moving around. It wasn’t exercising. This was just moving. Some days it was a big, exciting day because I took a shower.

You’re not feeling fabulous, but at the same time, you need to be able to move around. Just do a little bit at a time, and do a little bit more than the next day. If you’re not feeling so great, bring it down a notch.

You did chemo after the lobectomy

I was more worn down from the lobectomy, and then I did the chemo. That was a little bit harder than it had been previously. I did a scan following that, and the results came out well.

I had done so well that they decided that we could take the port out. I could physically go in and actually did it over the 4th of July weekend because I felt it was literally independence.

When they said I could get it out, I was like, “Let’s just do this now.” I didn’t want them to change their mind. Let’s get the port out and just make this go away.

Describe the follow-up after hearing you had no evidence of disease

I’m getting scanned every 3 months and talking to my doctor regularly. When you’re going through it initially, it seems you’re at the doctor’s 3 or 4 times a week.

Sometimes you’re getting 2 doctors in one day just because of the schedule and getting a hearing test every time before you get the chemo and all this stuff.

When you get back to the point where it’s like, “Okay, we’ll see you in three months.” It’s like, “Well, wait a minute, I’ve been here all this time. What am I going to do with my schedule now?”

It felt strange transitioning to fewer doctor’s appointments

It was a little sense of abandonment, because it’s like, “What do you mean?” They’re like, “Yes, okay, we’ll see you in 3 months.”

That’s the time you have to start being more intentional and start taking little pieces of your life back, as far as whatever your exercise program looks like, whatever your normal life looks like.

First Recurrence

First recurrence after 18 months of no evidence of disease (NED)

We just went in for my scans like a good patient. Every 3 months, I went in for my scan, a CT scan where they do a contrast.

It’s similar to what they did for the diagnostic, where they have an IV pushed in, and you have to drink this stuff to make sure everything’s okay in your abdomen. I’m still doing it every 3 months.

From one of my regular scans, that’s when we saw that there was something. My doctor called to let me know that there was something.

Nobody wants to hear ‘recurrence.’ Nobody wants to think about it, because I wanted to be done. This was it. I was done.

I was ready to move on with my life. Every part of me wanted to just shut the door and just move forward. That’s not what was in the plan, I guess. 

How did you process the first recurrence?

The first recurrence, in some ways, I felt I let my family down. I felt it was really hard to tell everybody because I felt like I did something wrong. That’s one of the things that goes on behind scenes, at the time in the heart.

I want to be a good patient, and good patients do this. I’ve watched the movie. They get into remission, and so I wanted to do that. I didn’t.
How do you tell them, and how do you tell them right? Let me know when you figure it out, because it’s just hard to do. 

Describe the microwave ablation

I had never heard it before. When I have this recurrence, my doctor tells me about it. I’m like, “Okay, what’s the plan?”

Now, I’m 2 years into the journey, so I have a lot more knowledge. I’ve reached out, I’ve connected with people, and I have a little bit of a better handle on what’s going on. She was saying, “Well, I think what we may have to do is radiation.”

The radiologist took a look at it and said that they would have an interventional radiology. There’s a specialty in it, being able to do what they call an ablation.

This is my non-science explanation, but the way I understand it is they stick a little probe inside of you. I picture a really skinny little soldering iron, and they burn this out of you. They don’t burn it like thousands of degrees; it’s only 110 degrees because your body’s only 98. They burn it down, and sometimes they freeze it out.

I was quasi-awake in their cocktail-y state in the CT scan so that they could see exactly where it was. I might have to hold my breath or move this way or that way. They went in, and they were able to ablate it and burn it all out.

We blew that up and got rid of that. After, they took a couple of samples of it so they could send it away for another biomarker testing.

Dealing with changes in the cancer

That’s what’s really important. Sometimes this cancer changes. Every time we have the opportunity to go in and see what it is, we mostly likely see what it is.

Most of the time, the insurance should cover it. If they don’t cover it, you generally can reach out to one of the lung cancer organizations, and they can help you figure out a way that it can become covered.

Were there side effects from the microwave ablation?

I’ve had worse PMS cramps through the years. I was lousy for about a day or 2, but I even went to church the next day. They watched me in the hospital overnight just as a safety precaution.

Then that was it. I was fine. I continued doing the scans every 3 months. I don’t even know if it was 3 to 5 months later, but I had another recurrence.

Second Recurrence & Radiation

Describe how you processed news of a second recurrence

It becomes just such a blur because I didn’t feel like I had recovered from the last one, and it was back at it again. Honestly, for me, I just feel like I was a disappointment.

I’ve always been a good student. I’ve always been a good patient. I do what I’m supposed to do. I tried to stop doing stupid things. I was disappointed in myself again, but it’s like, “Okay, well, we’ve got what we got. We’ve got to move forward with it.”

You can’t fix it if you don’t know it’s there. First find it. Now let’s do something about it. I know what it’s like to go through the other end of it, and I know how hard it can be later on.

I’m better off staying in front of it and just moving forward with it. Based on the scans and based on the information, they determined that the best approach was to do radiation, so I did 15 rounds of radiation.

Describe the SBRT radiation

I’m still picturing what the radiation is that my mom went through. This was not my mom’s radiation from the 90s. I wasn’t all burnt up; I wasn’t all fried. This was not like that at all.

It wasn’t bad like that at all. I laid down on the radiation table and laid still, which is not something I do very well.

I had to lie down for an extended period of time. As they’re marking me, they’re taking scans of me to see exactly where it is that they need to line up their radiation equipment so that they can hit it. That took like a good hour.

It was not easy to sit still, not easy at all. Then, when I actually went in for the radiation a couple of weeks later, they go back. They do their mathematical calculations, which I guess they have a whole department of people to do.

They have a pay grade way above mine. They go in and they determine exactly what they need to do. You lie back in the same place again. It was SBRT, and it was super short.

I drove up there, I laid down on the table, I was in there for maybe 5 minutes, and then I was gone. I was out the door. As long as I wore a yoga top or sports bra and stuff, it was no big deal.

Terri suggests wearing yoga-type clothing to radiation. Avoid metal!
Any more tips on what to wear to SBRT radiation?

Honestly, stay away from anything metal. Stay away from your underwires. It’s stuff like that. If I was wearing yoga pants and a yoga top with nothing metal, nothing on it at all, most of the time — I don’t say always, but most of the time — I can keep my clothes on.  

Describe the radiation schedule

It was 3 times a week for 5 weeks, which would destroy my whole afternoon. I would come home because it is still 30, 45 minutes to get up there.

You park, you get in, you’ve got to check in, and you do your thing. The actual part of the radiation is super fast. [It’s] way longer to drive up there, park, get in, check in, all that, and then come back out and drive back home. Then you’re trying to work it so that you’re not driving in rush hour traffic and all that, and so it’s great. It’s always like that.

Most times, I didn’t have to wait very long, just a couple of minutes. I just had those yoga tops on and stuff like that. I pretty much would just go in there and just lie on the table. I’d probably be in and out in 10 minutes at the absolute. It’s really, really fast.

Were there SBRT radiation side effects?

It would feel icky as it wore on. It depends on where it is within your body to determine if you may have some bowel problems or stomach problems.

I didn’t really have any particular problems. I’d just come home some days a little bit more tired — not fatigued like it was during chemo, but worn out. You feel like you’re stuck. I just really got used to having a life, and then with recurrences, they take your life away. 

Third Recurrence

You were NED for a year before you learned about the third recurrence

I had a recurrence, and we had to go through the same sort of thing. It had been around a year, and I had to go through another 15 rounds of radiation.

Just went through that and just fit into my normal life. Other than the inconvenience of the scheduling and whatever, I knew what to expect. I knew how to negotiate it through my calendar in my life.

Guidance for people who are dealing with recurrences themselves

It’s like anything else. You do what you’ve got to do. I’ve just taken that attitude whenever I go in. That’s where this scanxiety hits.

The scanxiety is this anxiety that surrounds the scan that you’re going to go in, and you’re going to have a recurrence. I used to get my scans every 3 months, and I try to keep myself really, really busy. Really busy so that I can sleep really well.

I get a little snippier than usual, but I might indulge in a little bit more chocolate or some of the other things I normally would not be so inclined to do, because I just tend to need a little bit of extra TLC. I keep telling myself that if it’s there. It’s there. I’m just going to know it is.

That’s the whole thing about lung cancer or about any cancer. It’s growing and it’s feeding inside of you, and you don’t know it’s happening. This gives me the upper hand. I have to take it and look at it as an empowering moment and keep telling myself that. It’s hard, but you do what you have to do.

How do you manage your cancer as a chronic disease?

I will be doing it because there’s a reason that we don’t really call it remission. We don’t call it cured. We’re told no evidence of disease. Even as though we’re looking at, again, I know people that have been doing this for 15 years or more, and they’re still getting scanned.

They may not be getting scanned every 3 months. It may only be one time a year, but they’re still doing it. At one point, I’ll go from 3 months to 6 months. Then from 6 months, it’ll probably go to about 9, and then from 9 months to about a year.

I think with a cancer diagnosis, it’s like anything else that happens in your life. The diagnosis isn’t going to go away. You’re just always going to have it. You always just need to be very vigilant about taking care of it and being intentional about getting scanned.

Patient Advocacy

Describe the shift from being a patient to patient advocate

You get what you get, but you’ve got to do something with it. I’ve just always been brought up with the mindset that you need to change what you can change and accept what you can’t.

When I had the lung cancer diagnosis, I had to deal with what I had. I went through the diagnosis, I went through the treatment, and I did the things that I needed to do. You feel so vulnerable, so helpless, and really confused.

As I learned more and found and connected within the different groups, I found out that there’s more people out there who have information, and they’re willing to share it.

I wanted to be one of those people who could help out and help reach that hand out to others. As I became involved, the first thing I did was I joined a lung cancer support group in our local community. We also have national groups around the country.

They’re not selling products. It’s just patients getting together, hanging out, and talking. Talking about what it’s like to be a patient and talking about doctors and stuff. I’ve really enjoyed it.

The importance of connecting with a cancer community

I’ve really enjoyed being able to connect with the other people and sharing what they had to say. Being able to just share and process what I had been through, too.

Being able to connect out with people, we just got in a little bit more engaged. I ventured out into Lungevity and the GO2 Foundation and connected with those folks to be able to give back and do phone buddies for people who were just newly diagnosed.

The lung cancer community breaks up into different biomarker groups around whatever the type of lung cancer that you have, mainly because we have different treatments that work for different people.

What are the different lung cancer groups?

Within the particular lung cancer groups, there’s EGFR, ALK, ROS1. It’s different groups. I wanted to find my group, but I didn’t know what my biomarker was. I didn’t know what was causing it.

I kept asking my doctor. My doctor didn’t give me the information that I needed so that I could understand. Finally, when I went out for a second opinion, I said to the doctor, “What is my biomarker?”

The doctor said, “You have a KRAS, and you have a certain subtype of a KRAS.” I was shocked, but I had something and immediately went home, looking for the KRAS people to be able to connect who have this particular type of mutation.

There wasn’t any group of people that had it. There was a group of people that had it, but I didn’t have one area of connection, so I started the KRAS Kickers.

What have you learned about KRAS?

What I’ve learned is that KRAS’s mutation is the most common cause in lung cancer. It’s also the most common mutation in pancreatic and colorectal.

Within the KRAS Kickers, we do have other patients that are from colorectal and pancreatic. Because I’m from the lung community, I’m most familiar with that. The largest group of people in the group has lung cancer.

Exciting new treatment possibilities for KRAS+ lung cancer 

3 years into my diagnosis, I found out that I have KRAS, and it’s K-R-A-S. KRAS was one of the very first mutations that they found that caused cancer, and it was 40 years ago.

The researchers had been trying to find some sort of a treatment, but they were unable to find a way to be able to specifically target that mutation. They had termed it “undruggable.”

Just recently, they have found out that there’s a way that it could be drugged. We’re going to be able to take a target, and we’re going to be able to do something along the lines of possibly taking just a pill.

It’s just different subtypes within it, but it’s like any path, right? You have to make the first couple of steps before you get further down.

But after 40 years, for the first time, they’ve actually made progress. They’re going to be able to do something. I’m having a hard time sitting still.

I’m jumping out of my seat because it is so exciting. You’ve got to understand. 40 years, right? 40 years of not having anything and not being able to do anything, and now there’s a possibility of being able to do it and being able to literally kick cancer’s KRAS.

We’re the KRAS Kickers, and that’s what we do. We help connect the patients with the most current information that there is around KRAS. The KRAS Kickers are that sweet spot in the Oreo that brings those 2 areas together.

We support each other and help connect each other with the information, with the current treatment, and with the support. We’re all going through different things. It’s different for every person. If you learn my story, it’s my story. Your story will be yours.

How important are clinical trials and patients taking part?

I’m here today because of research. My mom’s not here today because there wasn’t the research that we needed today. What we’re going to be here tomorrow is a result of what it is we learn today.

I went into this space not knowing what’s involved or what’s engaged in any sort of a clinical trial or research. It’s scary and confusing.

Now that I’ve actually learned about it, I have learned that you’re really treated well, but you’re treated to either standard of care or the experimental drugs.

The experimental drugs have been experimented on the little critters in the labs for years before they get it to you, and they are confident that this is going to be okay for you.

You are saving somebody’s life tomorrow by working on it today. It really is just where the heart of it is, and that’s really what gives me hope. I know that there’s not going to be hope for anybody tomorrow unless we start doing more today.


Thank you for sharing your story, Terri!

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Non-Small Cell Lung Cancer (NSCLC) Stories

Yovana

Yovana P., Non-Small Cell, Invasive Mucinous Adenocarcinoma (IMA), Stage 1B



Cancer details: Had no genetic mutations; IMAs comprise between 2-10% of all lung tumors
1st Symptoms:
No apparent symptoms
Treatment:
Lobectomy of the left lung

Dave B., Non-Small Cell, Neuroendocrine Tumor, Stage 1B



Cancer details: Neuroendocrine tumor
1st Symptoms: 2 bouts of severe pneumonia despite full health
Treatment: Lobectomy (surgery to remove lobe of lung)

Terri C., Non-Small Cell, KRAS+, Stage 3A



Cancer details: KRAS-positive, 3 recurrences → NED
1st Symptoms: Respiratory problems
Treatment: Chemo (Cisplatin & Alimta), surgery (lobectomy), chemo, microwave ablation, 15 rounds of SBRT radiation (twice)

Heidi N., Non-Small Cell, Stage 3A



Cancer details: Non-small cell lung cancer (NSCLC)
1st Symptoms: None, unrelated chest CT scan revealed lung mass & enlarged mediastinal lymph nodes
Treatment: Chemoradiation

Tara S., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms:
Numbness in face, left arm and leg
Treatment:
Targeted radiation, targeted therapy (Alectinib)

Lisa G., Non-Small Cell, ROS1+, Stage 4 (Metastatic)



Cancer Details: ROS1+ tends to be aggressive. It can spread to the brain and to the bones.
1st Symptoms: Persistent cough (months), coughing a little blood, high fever, night sweats
Treatment: Chemo (4 cycles), maintenance chemo (4 cycles)

Stephen H., Non-Small Cell, ALK+, Stage 4 (Metastatic)



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Shortness of breath, jabbing pain while talking, wheezing at night
Treatment: Targeted therapy (alectinib), stereotactic body radiation therapy (SBRT)

Ivy E., Non-Small Cell, EGFR+, Stage 4 (Metastatic)



Cancer details: EFGR-positive
1st Symptoms: Pain & stiffness in neck, pain in elbow
Treatment: Two targeted therapies (afatinib & osimertinib), lobectomy (surgery to remove lobe of lung)

Ashley R., Non-Small Cell, EGFR+ T790M, Stage 4
Diagnosis: Stage IV Non-Small Cell Lung Cancer
1st Symptoms: Tiny nodules in lungs
Treatment: Tagrisso (Osimertinib)

Shyreece P., Non-Small Cell, ALK+, Stage 4



Cancer details: ALK+ occurs in 1 out of 25 non-small cell lung cancer patients
1st Symptoms: Heaviness in arms, wheezing, fatigue
Treatment: IV chemo (carboplatin/pemetrexed/bevacizumab), targeted therapy (crizotinib, alectinib)
Amy G.

Amy G., Non-Small Cell Squamous, MET, Stage 4



1st symptoms: Lump in neck, fatigued
Treatment: Pembrolizumab (Keytruda), SBRT, cryoablation, Crizotinib (Xalkori)
Dan W. profile

Dan W., Non-Small Cell, ALK+, Stage 4



1st Symptoms: Cold-like symptoms, shortness of breath, chest pains
Treatment: Radiation, targeted therapy (Alectinib)
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