Brittany Wagner
Cervical Cancer Stories
Squamous Cell Carcinoma, Stage 4B

 

“You're doing great. Keep it up. I just look back at all of the doubt that I had every step of the way. I think everyday that you live with cancer, you're a cancer survivor.

Every time you wake up and decide to have a good day and get through what you need to get through, you're doing amazing.”

 

  • Name: Brittany Wagner

  • Diagnosis (2016):

    • Cervical

    • Squamous Cell Carcinoma

    • Stage 4B

  • Age at Diagnosis: 30

  • 1st Symptoms:

    • Spotting after sex

    • More spontaneous bleeding

  • How diagnosis happened:

    • Hemorrhaging led to emergency room stay

    • Ultrasound didn’t detect anything at first

    • Brittany pushed to have IUD removed

    • During camera-guided removal surgery, doctor spotted massive tumor

    • Biopsy revealed cancer

  • Tests and scans pre-treatment:

    • Ultrasound

    • Biopsy of pelvic mass

    • PET/CT scan

    • Fine needle aspiration (for staging)

  • Treatment:

    • Concurrent chemotherapy (Cisplatin) and radiation

    • 2nd round of chemotherapy

      • Carboplatin and Paclitaxel

      • 6 rounds

    • 2nd round of radiation

      • Focus area: chest and near esophagus

    • Immunotherapy

      • National Institutes of Health trial

      • Ended when one mass grew more than 20% during trial

    • Targeted therapy

      • Avastin for indefinite period

      • Goal: to keep cancerous tumors from growing


Table of Contents

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I. Diagnosis

What were your first symptoms?

It started off with a little bit of spotting or bleeding after sex. I remember it very clearly the first time it happened because it was Thanksgiving morning and I was with my husband. I was totally freaked out. I put it on the back burner because it was Thanksgiving. I chalked it up to I had an IUD, I made a lot of different rationalizations in my head.

A few weeks later I ended up going to get a pap smear and I was bleeding. I wasn't supposed to have my period. It was my first time seeing that gynecologist. She reprimanded me, "You know you can't come when you're on your period." I said, "I'm not."

One thing led to another and I was telling her about this. She said, "Okay, you know it is probably your IUD. I can't see it right now so I'm assuming that maybe it's shifted or something and that's what's [causing this.]"

Cut to a few weeks later, I was asked to make an appointment for an ultrasound. My insurance was [saying], "We can only do it six weeks out.” So I was waiting for an ultrasound and then on Christmas Eve with my whole family around, my in-laws and my parents, I started hemorrhaging. That really scared me but I didn't wanna say anything because it was Christmas. I had my whole family here and in a way I guess I was being a little willfully ignorant about the whole thing.

The next day I ended up in the emergency room because it had happened again overnight. So the day after Christmas I ended up in the emergency room. I was there for ten hours. They did an ultrasound, they told me they couldn't see anything. They didn't know what was wrong with me and they put me on birth control, saying I had something just called irregular bleeding or something. But I knew something was off. I kept pushing it to get the IUD out.

Going out before treatment.

Going out before treatment.

What led to the diagnosis?

Finally, I went to have it surgically removed with a camera, and thank God that the woman who did that procedure happened to be basically the specialist in gynecological biopsies. As soon as they put the camera in my cervix, they saw a huge, massive tumor and she was able to biopsy it right that second. Actually had another doctor come back to the hospital to confirm that it was a cancer diagnosis.

I woke up from thinking I was having a quick IUD removal, to basically I saw my husband. I asked him what happened, if they had got it out. He told me no, and right at that moment I just knew something was really wrong. Basically that night they told me [I was] anemic, because I had been hemorrhaging so much. “You have to be in the hospital. You need a blood transfusion. This is definitely a cancerous tumor, and you need to start seeking treatment right away."

After that I went and met with the gynecological oncologist and they did all of the scans. At that point, [they] diagnosed me with stage four cervical cancer.

You had to deal with misdiagnosis

I had that and to make matters even worse, when I had gotten the pap smear it had come back for HPV so my doctor had referred me to get a colposcopy, [where] basically they cut some tissue and test it from your cervix. But they wouldn't do the colposcopy because they said I was bleeding. They were like, "We have to get the IUD out before we can do the colposcopy, because that's what's causing your bleeding." But really it wasn't at all.

They had been putting off actually doing the test that could’ve diagnosed the cancer. It was a really challenging time and I have several women that I know from the cervical cancer community, that have had very similar experiences.

Describe the first biopsy

Brittany+hospital+gown.jpg

The biopsy wasn't done until the end of February, actually. They had put me on this birth control and said, "You just have some irregular bleeding." I was like, "Okay, whatever."

I had gone to get the IUD out at another appointment. I'm not sure how familiar you are with IUDs but generally you can just pull it out and be done with it, the gynecologist can. But for whatever reason they kept scheduling this appointment to get it out, and then they couldn't see it. They couldn't figure out why they couldn't see it or whatever, and it was because there was obviously a massive tumor in the way.

But they just kept saying, "Oh, it's shifted," that it had shifted. So it took me until the end of February of that year to actually get the proper appointment and get the diagnosis, even after I had gone to the emergency room.

Describe the two months before your diagnosis

There was more bleeding, more hemorrhaging. I remember being at World Market and having to run out because I was just hemorrhaging. I was starting to develop really intense lower back and hip pain on my left side. But I had been working out constantly and I just thought that's what it was from.

Again, I don't know if I was at the time fully convinced of that, but wanting to think that. I was feeling progressively, progressively worse. To the point when I finally did get my diagnosis, I was almost relieved. Not relieved, but I like just, "Uh! Okay, this all makes sense now."

What was your reaction to the preliminary diagnosis?

1st hike after diagnosis.

1st hike after diagnosis.

Well, my husband actually broke the news to me about the cancer because he had been informed by the doctor, who did the biopsy before I even woke up, that they found something and they were pretty sure it was cancer.

My husband was the one that told me. The doctor had asked him not to say anything to me until she was able to confirm or come back in the room. When I asked him if it had worked, and what was wrong, he said he just couldn't lie to me or say anything. So he just spilled it, "They found something and they think it's cancer."

I was just completely overcome with all different types of emotion. Like I said, relief. But of course, just utter, utter sadness and fear.

It's kind of weird and I don't know if this is something you would share with everybody, but I've always felt like in my life I've always been waiting for the other shoe to drop or something. When she told me that, when my doctor told me that, sitting in that hospital room, something clicked and everything made sense in a way. Even though it was absolutely terrifying and the scariest moment of my life.

How did you break the news of the diagnosis to your loved ones?

I was with my husband. I remember not being able to call and tell my mom. I asked my husband to do that, 'cause they admitted me to the hospital that night because I was so badly in need of a blood transfusion.

I broke the news to my family and friends. It was hard. I mean, to my parents like I said, my husband is the one that originally told them of the diagnosis. I called my best friend, who's really more like a sister to me, honestly. I've known her since I was eight. I told her. At that time I was basically like, I assumed it would be a slow stage of cancer. I just thought, "Okay, I have this and we're gonna get through this." I just remember I was more concerned about their feelings and telling them these things then I was about myself, at that time.

When I had to tell my parents about the staging, that was hands down the hardest thing. Having to tell them that I was stage 4B or whatever, that night I think I had, I don’t know, a crazy, large glass of just gin to get through it, telling them. I just remember saying, ‘It’s really not good you guys. I’m gonna do the best I can, but it’s really not good.’

Then my husband thankfully has been an amazing caretaker in all of this and has done all of the research and everything. So he was able to research more of the details. But I found having to tell other people to be literally the hardest thing about this. I find it so hard to have to share with my loved ones.

II. Tests & Staging

What were the tests, scans and biopsies that you had to undergo?

  • Ultrasound

  • Pelvic mass biopsy

  • PET/CT scan

  • Fine needle aspiration

When I went to the emergency room I had an ultrasound. I don't know why that didn't pick up anything, but apparently it didn't. After that I had the original biopsy of the mass in my pelvis.

Then I had a full PET/CT scan which showed that it had spread to lymph nodes and my abdominal area. Then also it spread to a lymph node in my neck. So I had to have what is called a fine needle aspiration, which is basically a biopsy that they do. They stick a needle in a lymph node if it's surfaced, if it's close enough to your skin. That did come back and confirm that the lymph node in my neck was positive for cancer. That's how we ended up getting not only a stage 4, but a stage 4B diagnosis. That's the absolute worst one you can get.

And like I said, that literally all happened within three days, so I was going, going, going. Constantly doing things to get the diagnosis. Doctor appointments every day. Then that Friday, when I knew I had all weekend and I got the final diagnosis, that's why I collapsed a little. Because it was all the tests were done, all of that was done, it was just those words. Then you go home and somehow try to continue your life.

The only question I could get out was, "Oh, can I still do yoga?" I do a lot of yoga now, but at that time, don't know why I asked that. I thought it would make me seem healthier or something. I just remember how dumb I felt after I said that.

Brittany+hospital.jpg

Describe the pelvic mass biopsy

It didn't hurt at all. I was put completely under general anesthesia. It was supposed to be a quick in-and-out procedure. Basically they put you under and you go home that same day. No issues, it wasn't painful. But because they had found me to be so anemic, that's where all the complications had come in.  

The biopsy was a couple of hours because they basically weren't going in to biopsy it. They had to scramble and get everything together while I was on the table.

Describe the PET/CT scan

I had never done one before and I'm someone who suffers from anxiety, so I remember being really, really scared about going into the machine. I'd always heard that people with anxiety or people that are afraid of close quarters don't do well. So I was more scared about flipping out and having a panic attack than I was about anything that would come up in the results.

But honestly, again it wasn’t as scary as I made it out to be although, I do have to say they did pretty heavily sedate me at that point. But that’s okay. If there’s a message there, it’s okay to ask for Xanax if you’re scared of the imaging machines. Or just if you’re scared about getting them.

I had to be in the machine at that time for about 15 or 20 minutes. I'd never had a scan like that before where you're fully immersed in a machine that's completely surrounding you for that long. I never had one like that. But yeah, that first one, it was about 15 or 20 minutes that I was in there.

Describe the fine needle aspiration

The fine needle aspiration biopsy also wasn't painful, but just very scary. That one you're under local anesthesia and you can tell someone's basically digging around inside your neck. It's just very uncomfortable. But also very quick, so there's that to it. The fine needle aspiration was maybe 10 minutes total.

How long did it take to get staging?

Actually only a few days. We worked really, really quickly. That night when I was in the hospital I had emailed my work and said, "Look, I'm not gonna be in for probably a week. I have some crazy health stuff going on."

Within a couple of days we had gotten the staging because I remember I went into the hospital on a Tuesday and it was that Friday actually when I got my official diagnosis.

Do you remember the moment you got the staging?

After scans and everything, when you're told it's actually stage 4. That moment, at that time, I lost my thought of I can get through this, I can do anything and all of that. Really just fell apart for a few days at that point.

They had prescribed to me, I don't know, some sort of narcotic pain pill for all of the pain I was having in my back. I just totally felt medicated. They told me on a Friday and I totally felt medicated for that entire weekend. My parents were down and I just look at myself in photos from that time or even a little bit before that, and I just see how gaunt and drawn I looked. I didn't have any blood, so I distinctly remember just sitting in the little exam room with my back up against the wall with my husband. Having the doctor tell me it's stage 4 and we're gonna give you the best that we've got, but we really don't know how much good it will do.

At that point was when I was really like, "Holy shit. I don't know if I can do this."

III. Treatment Decisions

Did you get a second opinion?

I did decide to get a second opinion, because I knew you have to be your own advocate.

I'm lucky enough, living in the Washington, D.C. area, and having the insurance that I have because my husband's active duty military, that I was easily able to get the referral for a second opinion and go to Johns Hopkins. I saw a really great gynecological oncologist there who was a woman, which for some reason made me feel better. Because up until recently, every single one of my doctors had been male. I was able to meet with her and she said, "I know your doctor, that hospital you're going to. I think this is the absolute best course of action."

And let's be honest, at stage 4B there's not a ton of options there. You pretty much, if you can, undergo radiation. You do radiation and chemotherapy, and those are really your only options. Just hope that it knocks out as much of it as possible.

But I still thought it was important to see another doctor and ask the questions because I wouldn't have been able to forgive myself if I had left something on the table.

How did you decide where to get treatment?

I didn't really have any options there because my husband's active duty military, so we have to go to military medical facilities. I ended up with this team of doctors because that was my only option unless I had gone to Johns Hopkins for the second opinion, and they said, "Absolutely not. We would do things completely differently." Then I could have left to go somewhere else. But I ended up getting treatment at Walter Reed, where I'm still getting treatment. Just because of how our insurance system works.

Is the hospital you're at now, is it a smaller hospital, larger medical center?

I would characterize it as pretty small. Because you have to be either active duty or retired military to go there. I don't know how many people that they treat, to be honest. I would say it's probably a smaller hospital. It's not M.D. Anderson, or the Mayo Clinic by any stretch of the imagination.

What have been the pros and the cons to the hospital size?

We'll start with the cons. Because they are a smaller hospital, and especially being a military hospital and dealing with the gynecologic cancer. Even though my team is amazing and they work with the best of the best, I feel like I have to really advocate: do my own research, go out seeing what clinical trials are offered around at different places. It just helped be on top of that for myself. Whereas, I think at some of the larger hospitals, there's just more resources there as far as that goes.

But the pros are definitely that I feel really comfortable there. Because I know that my doctors really know who I am individually. I have what's called a nurse navigator. I know a lot of places do this, but any time I feel any weird ache or pain, or feel like I need a prescription, or feel like I need a test or something, I can just text her and she always gets back to me within an hour. I just love being able to have that, it's a big asset to me team. Whereas, when I was at M.D. Anderson, if I had any questions like, "Okay, we'll submit a question through this form. Then we'll email you back." There's a lot more levels of bureaucracy there.

Describe getting the port put in

1st day of treatment with Brittany’s port.

1st day of treatment with Brittany’s port.

I got the port put in a couple days after my diagnosis before I even had a second opinion because they were basically like, "We need to move and no matter what kind of treatment you do you're probably gonna need some sort of infusion, so I'm gonna put your port in."

The procedure was fairly easy. They put you under local anesthesia and you basically don't feel any pain, but it's uncomfortable and there's some tugging. They put you in what I think is called a twilight sleep, so while you're not necessarily completely zonked out, you're not really aware of what's going on. But it's a pretty quick procedure, maybe 30 minutes.

What I was not expecting was how painful the recovery was, or maybe I had just been so jilted by that point, I didn't care, but I had made plans to hang out with my friends that night of getting the port placed and I was in so much pain just from the whole procedure, I couldn't even think straight. I remember I ended up leaving, going home, and just taking the pain pills they gave me and going to sleep for the rest of the weekend, because this was also on a Friday.

So I was a little surprised by that. What I always tell people, I'm kind of active in the Instagram community or whatever, and people are always like, "Oh, I'm getting my port line placed," and everyone's like, "Oh, it's no big deal, blah blah blah. You're fine." I always want to be that one detractor like, "Not to scare you, but just so you know it's a little painful afterwards so just don't plan anything. Take the time to recover," and all of that.

That was something, but I obviously recovered in a couple of days. People tell me I'm really lucky 'cause the scar isn't very pronounced, so that's good.

IV. Chemotherapy & Radiation

Describe the first round of concurrent chemo and radiation

The original treatment, my first treatment I had was a combination of chemotherapy and radiation. Basically, the chemotherapy was intended to boost the effects of the radiation.

So I did that for about six weeks where I would get Cisplatin every Monday and then do a full five straight days of radiation to my pelvis and to the lymph node in my neck.

For about six weeks, I did Cisplatin every Monday, which was just like through an infusion, just like regular chemotherapy, and really the intention of that chemotherapy was just to boost the effects of the radiation therapy. So then I went every day, every Monday through Friday more or less for six weeks to radiation every day to have radiation to my pelvis and to the lymph node in my neck.

What were the chemotherapy side effects?

I believe it was like two hours every Monday. Right after that I would go into radiation. I didn't really have any side effects I don't think directly from that Cisplatin chemotherapy. It generally doesn't give you a lot of side effects. They also had me on a great deal of steroids and anti-nausea to combat any of the side effects.

I would say some of the side effects of the steroids, as I think anybody who's had chemotherapy knows, almost seem worse. I'd rather just be nauseous than deal with some of the steroid side effects. I don't know. I just never could sleep. I always felt out. I just didn't feel right.

But from the radiation, it started off on an upward swing. I started to feel better because it was working and the pain in the neck was going away, and so let's say that's the first two-and-a-half weeks of the six weeks.

And then it starts to go downhill a little bit where it's like you're no longer getting all of that excitement from the good effects of it and you're starting to get more tired and more nauseous. I remember I went to lift a box with clothes in it and I almost passed out. I was so weak and so tired.

Feeling sick after first cycle of chemotherapy.

Feeling sick after first cycle of chemotherapy.

What helped with those chemo side effects?

During that time, I had to have, I don't know, like three or four blood transfusions because I was already fairly anemic from all of the hemorrhaging. Then I guess a lot of your red blood cells are made in your pelvis, so you're radiating your pelvis within an inch of its life, your body can't make blood cells. So there were several times when I would get lab work done, come home, and have them be like, "You need to come back. Your red blood cells are so low. I don't even know how you're functioning."

That was definitely a lesson to [self-advocate] because I just assumed that that's what it felt like to have cancer. I didn't think, "Oh, there's something wrong." It's a side effect of something, and so that was a really good lesson for me to learn that you don't have to feel terrible.

Describe the blood transfusions

Before getting a blood transfusion.

Before getting a blood transfusion.

It's kind of like a chemo infusion except there are no side effects of it. You just sit there over the course of a couple of hours and they slowly provide you with red blood cells or white blood cells or just blood, whatever it is that you need.

When they would have to do emergency transfusions, I would have to go stay overnight and they basically wake you up every hour to check your blood pressure and you stay overnight and then you could go home if your cell counts are where they should be.

What were the steroid side effects?

For the steroids, it was [during] the summer. I remember I went on a beach trip again because I was like, "I won't be different with my girlfriends." I didn't know why at the time, but I felt like a massive beast. I hated the way I looked in a bathing suit, and I just couldn't understand it. I was like, "I mean, how did I gain all of this weight?"

I had lost a lot of weight from the radiation. [It] makes you lose weight sometimes, and I couldn't understand it. Not until after, even maybe six months ago did I realize like, oh, that was the steroids making me feel that way and act that way. I was really emotional all the time. I just chalked it up to my body and all of that. I didn't realize that it was probably from the steroids.

I guess another thing that I think came out of this is me learning you don’t have to keep pushing. The things that I would do when I was so anemic that I had to come in and have an emergency blood transfusion are insane to me. I think I went jogging one day and I was just like, “Oh, I mean, I guess this is how it feels to jog with cancer.” I had no idea what I was doing to myself for a while, and because I also just refused to give in. No matter how bad I was feeling or whatever, I refused to just allow myself to be sick, and that was a lesson I had to learn as well.
Halfway through radiation (first round).

Halfway through radiation (first round).

What were the radiation side effects?

That’s what I was saying where you start to feel better from radiation helping where your tumors are. My back pain went away and it's really good, but then on radiation you just start to get so fatigued.

Again, I had blood transfusions and I also got, because where they were radiating on my neck was so close to the skin, I got terrible burns all down my neck. My friends were like, "Just use aloe vera, like real aloe vera from the leaf. That's all you need."

And so I was putting that on and it wasn't getting better and finally I got the burn cream from my radiation oncology nurse, prescription, and within a few days, the burns were completely gone it seemed.

So, I suffered for no reason.

V. 2nd Round of Chemo & Radiation

Describe the 2nd round of chemotherapy

It was six rounds of Carboplatin and Paclitaxel. That's when I had more of your traditional chemotherapy regimen. So we had great luck with the radiation. Basically apart from completely curing me, it did as best as it could.

However, as it's getting all of the spots that were originally there, new spots were kind of popping up because radiation is a local treatment whereas chemotherapy is kind of systemic, meant to get everything. So I did a round of chemotherapy to try to get anything that was left behind or anything that might've popped up while I was doing radiation. Unfortunately, after six rounds of that kind of traditional chemotherapy, I still had a couple spots left, so that's when I went into another round of radiation.

Describe each cycle of that chemotherapy

It was every three weeks. I would go on Mondays, and that infusion was about five hours. I would get there early in the morning. They would do sulfates and just kind of fluids and stuff and then do the infusion over four hours I believe.

What were the 2nd chemotherapy side effects?

For chemotherapy, the side effects hit me really hard really quickly on the first round. I was tired all the time. I was nauseous. I don't know. I never felt like I was gonna throw up, but I just constantly felt like things were spinning. I had really bad bone pain, which is awful, like pain that stretches out in the bones.

That was really bad the first time I got it. I think it took me about four or five days, maybe even six to get over those side effects. I mean, my husband said every time I got the chemo, you could just see the color draining out of my face and my skin turning yellow over the four hours.

That kind of cycle continued every infusion but got better. By the end of it, my recovery time was maybe two days instead of six days, but I still experienced the same kind of side effects every time I would get a cycle of it. Then also it did make my hair fall out.

Honestly, I'm very lucky and I say this all the time, that I take to the medications and the treatments very well. I'm very lucky in that so they can push them as much as possible without having to worry about me having really negative side effects.

What I was saying about everything can be good news, to me that's one of those things that, okay, that's good news for me. Even though maybe the treatments aren't always working 100% like we'd like them to, they're not necessarily making me super sick and really robbing me of a lot of my life, so I feel very grateful and I'm very happy for that.

2nd+Rd+Rad+Wig+Vegas.jpg

Describe the 2nd round of radiation

After those six cycles of chemo, we found that everything that was originally cancerous had gone away. However, a couple new spots had popped up in lymph nodes in my lungs.

At that point they said, "We can start to look at the clinical trials. We don't think chemotherapy is good for you because obviously it allowed these other spots to pop up while you were on it. We can do radiation on the spots that are there and hope nothing else pops up, or we can start looking for clinical trials."

I elected to do radiation again at that time. It was over Thanksgiving. So again, I had radiation in my chest and near my esophagus. I actually worked during that time. I worked three days a week, so I would go to radiation at like 7 a.m. and then go straight to work.

What were the 2nd radiation side effects?

Same kind of side effects. My biggest side effect there since it was near my esophagus, it became kind of challenging to eat just because there was scar tissue building up. It was right over Thanksgiving too, but luckily I stuck through it and I kept being able to eat, thinking we're gonna have to put in a feeding tube, which I inevitably did have to have at a different point. It was like, "No, I'm not doing that. I'll be fine. I'll eat mashed potatoes. I'm not doing that." I was able to get through it.

You underwent no surgery

No, I've never had surgery as an option. When I was first diagnosed, it's like the cancer was so rampant that to remove it just didn't really make any sense because they would've had to take out so many lymph nodes and things.

To this day, we've never really discussed [surgery]. Well, we have discussed maybe surgically removing a mass that I had in my esophagus a couple months ago, but it was in a very precarious place, so to remove it surgically was a very high-risk surgery.

What was the result after this second round of treatment?

Unfortunately during that time, new spots popped up. We were able to radiate everything that was there, but new spots popped up, and that's when I started on a clinical trial.

Describe the moment you realized there still wasn’t a “No Evidence of Disease” (NED)

I mean, that was hard for me. That was a hard day because we all talk about the anxiety or whatever. That was a time the anxiety was the worst because it was either there's no evidence or disease and come back in three months, or there is evidence of disease and we're starting to run out of our options, right? And so that was really hard to hear that we didn't get the news that we wanted to get.

I was working. I was back at work and in the middle of a huge conference where I was speaking at and I had to leave early to go get my scan results. It was like, "Either I'm gonna be really happy at the end of this day or really, really sad." It turns out that I was really sad. I definitely didn't go to work the next day and I just kind of took that afternoon and the next day and to just be sad and process. I almost tear up thinking about it now, but after that day, I was like, "Okay, what's next? Let's look at clinical trials," so then we started exploring them.

VI. Immunotherapy & CyberKnife Radiation

What do you remember of your conversation with your oncologist considering new options?

So basically at that point they were like, "We need to maybe explore something."

There were two different trials they wanted me to go up for. The one was basically they used your cancer cells to grow some sort of vaccine. I don't know very well or don't remember very well all of the details because I had so many of these conversations, but I wasn't eligible for that one because for whatever reason, my cancer didn't have the correct marker.

So then I ended up doing an immunotherapy trial, which was a little bit less specific for cervical cancer, but I was still eligible for it.

Describe the immunotherapy trial

I was on that from about May to July. I was excited to pursue clinical trials because I do think cancer treatments are constantly, constantly improving and evolving and getting better. Not only was I excited for my own medical benefit, but there is something that feels really good about being able to participate in maybe creating a treatment for others.

Also, it wasn't a hard treatment. There really weren't any side effects. It was basically an injection. I would have to go for seven days in a row again, every three weeks.

What were the results of the immunotherapy trial?

AfterFindingCancerSpotsPost2Treatments.jpg

Unfortunately it didn't work for me. It was not successful. Basically while I was on this immunotherapy trial, and this is at the National Institutes of Health over the summer, there was a mass again in my esophagus that started to grow. So if you have more than 20% growth on this trial, you can't be on the trial.

Also because the mass was in my esophagus, everyone was really concerned that it was gonna start obstructing my ability to eat and swallow, which it eventually did. I hate to use the term “kicked me off,” but I was kicked off the trial and I went back to my regular oncology team to try to figure out what we were gonna do now about the mass in my throat.

What were the next steps?

At that point they were like, "We're gonna biopsy and then we're gonna come up with a treatment plan." My head of gynecological oncology team had transitioned out, so a new doctor was coming in. For those of us who have had to go through lots of different types of treatments, I was just over it at that point, so I took a little bit of a break.

We did the biopsy. I wasn't having any specific symptoms at that point so my doctors were like, "Let's chill and think about this for a little bit." I went to a music festival. I was at that point like, "I need a break from all of this because I can't think straight anymore." Again, now we were running out of even more options, right?

That was all well and good and I had my few weeks off, but when the symptoms did start coming from the esophagus mass, they came on really, really quickly. So I ended up in the emergency room not being able to swallow any food. That's when I had to have the feeding tube placed, which again, I was entirely against but it was so bad, they were really afraid I would aspirate or something, so they basically forced me into getting the feeding tube

Because I was in the hospital then, the conversation was very different. My team was working really hard to figure out what we were gonna do because I’d already had radiation to that area. At a certain point, you can only be radiated so many times in the same area. This was kind of the scariest time for me of this whole thing because when I ended up having to go the emergency room, I thought, “I might not ever leave the hospital at this point. If there’s nothing they can do, this might be where I start just getting sicker and sicker.”

But at that same time, I was very solutions-oriented, like, "Get me to the place I need to be so that I can start looking at treatments." And so I was in the hospital. I really wanted to do radiation to that area and they were able to do something called CyberKnife treatment.

Describe the CyberKnife radiation

I had thought that because I had been so successful under radiation before that just to shrink the mass enough so that I could eat normally and get rid of the feeding tube, at that point that was like, "This is all I want to do. Let's just focus on that." So we were able to do that.

Luckily, my radiation oncologist is amazing. He told me he's given me the most radiation dosage he's ever given anyone, which I appreciate him for because I was like, "This is what I want to do. Do it. I'll be fine. I'll make it through. I'll do what I need to do, but I need you to go hard and get rid of this thing 'cause I need to be able to eat."

So, we did the radiation, over two weeks of CyberKnife therapy.

What were the CyberKnife side effects?

Honestly, the side effects were minimal except for just having to go every day and a little fatigue, but really they were minimal.

What were the CyberKnife results?

We were able to shrink the mass by like 70%.

Now I could eat. I'm good. I can do all of that stuff. So now, basically where I am now is on the other half of that treatment. After the radiation, I wasn't symptomatic, so I felt like I had a little bit of time. I wanted to explore clinical trials because basically, I didn't want to commit to palliative therapy at that point. I really still wanted to be no evidence of disease and still see if the right opportunity arises.

VII. Targeted Therapy

What options did you consider at this point?

I talked to Mayo Clinic. I talked to MD Anderson. I did a lot of research about other clinical trials and other types of chemotherapy, but ultimately, there was really nothing for me that was better than just doing the palliative chemotherapy at this point.

There was one clinical trial that used a certain type of immunotherapy that I was eligible for, but it was a big ask physically and mentally and I just didn't think it was the best option for me at the time. It was really hard to say no because you want to just always, I guess balls to the wall like, "Whatever. I don't care. I'd rather be alive than have hair," or whatever, but also at a certain point, part of being your own advocate is you can't just let people push you into something because it's available.

You have to really weigh the cost benefit analysis to yourself. So, through all of that, that's when I had my most recent scan, which actually showed up better than my oncologist was expecting.

You decided to go on targeted therapy (Avastin)?

So that's really good and so now I'm on Avastin, which is considered palliative. My last scan was at the end of December. My second dose or my second round of this is on Wednesday. I just had my labs and my meeting with my doctors this morning.

How often are you taking Avastin?

It's every three weeks, so every Wednesday I take it.

VIII. Dealing with “No Standard of Care”

How do you deal with the lack of standard of care for the disease?

I mean, I guess I just kind of feel like this is my way of life now. I never went into this thinking that because of how advanced my diagnosis was, I never really went into it thinking that I would have the traditional story of you do the chemo and then you're cancer-free and then you go on to be a survivor.

I’ve always kind of taken issue with how we describe a survivor. It was also like #LifeAfterCancer. When you’re going through this, maybe you’ll never be done being treated, and that’s a blessing. Every treatment that I go through is a blessing because it’s keeping me alive that much longer. Who knows what clinical trial they will come up with in a month that might be great for me?

I don’t have to put my life on hold until I don’t have cancer anymore. I have life with cancer and I treat it like a chronic disease, like people that live with all different types of diseases that constantly have to get treatments, dialysis, things like that. I look at it in that way, that it might always be a part of my life. I didn’t put my life on hold to battle cancer. Battling cancer is going to be a consistent part of my life.

Even if one day I’m in remission, it’s still gonna be a consistent part of my life, and that's okay. That's okay. It doesn't stop me from doing anything I want to do, and in fact, it's brought some opportunities to me that I might not have had before, so I think that's important to remember.

[Opportunities] for perspective. I'm currently not working because I'm lucky enough to have a good disability insurance, but I never would have this time to myself to think about what I do. And absolutely perspective. I don't know but I'd rather live five years with the perspective I have now than forever with the perspective I had before my diagnosis.

I feel like it sounds selfish in a way because I know that my friends and family suffer a lot, but I’m really much happier with life now. It’s true. When you find out life is fleeting, it does change your perspective.

You feel gratitude

I hope that does come through because I am very grateful for the things that I do have that make this easier on me. There are people that if someone else had the same diagnosis as me, I could've been much different because I'm just so lucky to have a lot of resources and a lot of people around me.

Be a self-advocate

Absolutely. And not just in terms of diagnosis, but in terms of all of your treatment, is that if there's one thing I learned, you have to be your own advocate.

As much as we know that our doctors are there for us and wanna take care of us, and whoever else in our community that's helping with our treatment. You have to stand up for yourself, make sure that things are being done properly, and how you want them to be done. Because again, and I don't blame this entirely on my doctors or whatever, because like I had said I was being a little willfully ignorant about the whole thing. But if I hadn't kept pushing and pushing, who knows how much longer I would've gone without a diagnosis?

IX. Hair Loss

Describe the hair loss

It was hard for me. Losing my hair was really, really hard for me. I was a little surprised by my reaction because I joke all the time: I'm incredibly vain and insecure. I love my own reflection or whatever. I'd rather be bald than dead or whatever.

It was the first time throughout the entire process that I didn't feel like myself. When you look in the mirror, you don't see yourself anymore when you don't have eyebrows, you don't have hair, no matter how good the wig is. When you look at yourself, you still don't see you.

That was really hard for me. I remember I knew when my hair was gonna start falling out and I just tucked it up like a messy bun for about eight days. I didn't wash it. I didn't touch it.

And then the night of my best friend's 29th birthday, I was like I have to wash my hair. I have to shower. I can't go out like this. I basically just pulled my bun off my head. It was just all hair in my hands. I was like, oh my goodness.

That was the first night I ever wore a wig out in public. I hated wearing wigs but I did it. I tried to see the positive side to it. You can definitely wear easier with a wig than your own hair.

I had this hairstylist friend of mine just shave it. Because I felt like that was gonna be easier than waiting to watch it fall out.

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How did it feel after shaving your head?

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After I had my head shaved, I met up with a friend for lunch and I went out without a wig on or a scarf on with just my shaved head. I was okay with it. The problem though is having a shaved head than having no hair at all. Once even that stubble starts to go away, you really feel like an alien. Once I lost my eyebrows, that was really, really, hard.

I'm still struggling with my hair growing back. It's at a place where I finally look at mirror and feel like I look like myself. Finally. It's been 18 months since my hair started growing back. But it's taught me a lot about vanity and what person can endure. How little it matters how our hair looks, how perfect our eyebrows are.

It taught me a lot about my relationship the fact that my husband never looked at me differently once. That meant a lot. That definitely meant a lot.

What helped most with the hair loss?

Losing your hair it sucks and it's hard but it's a great plan to experiment with looks that you never in a million years would ever do. When my hair was shorter and just growing out, I dyed in platinum blonde. I loved it.

I have crazy chemo curls, but I just tried to focus on the side that's either different things that I never would have done in the past and I get to play around with my style for. That's something to take away from it.

X. Financial Support

How was dealing with finances?

As far as that goes, super, super lucky that I've had great insurance. That I have great [support]. My husband is in the military, so obviously he has a very stable job and a very generous leave package. I'm very lucky in that regard.

I was 31 or 30 when I was diagnosed and I'd finally gotten the job that I have dreamed of. I got to travel. I finally felt that I was really coming into my own professionally, which is something that was important to me. I worked on and off. Luckily, my company was great to me and let me take long leaves of absence for when I needed to. Or let me come back and work part-time when I wanted to or work full-time when I wanted to.

Could you work during treatment?

Ultimately in April, when I needed to start the clinical trial, I decided to kind of give up work. It was really hard for me, but again I looked at it like it's not forever. Right now, I need to be in the business of getting better.

I'm lucky enough to have resources to devote myself 100% to that cause and not have the added stressors of competing. I owe that to myself. Not only do I owe that to myself, I owe that to all of the people that love me. A lot of times I feel I'm perfectly fine and tomorrow I'm going to spend my day going to yoga, to lunch. Living like I would never expect to be able to live. I look at that as like I need to be doing that right now, so that my body can feel itself as best as possible.

It's like okay, you don't have to do it all. If you can take a step back from your company, then you are more than entitled to do that.

XI. Emotional & Mental Care

What helped most with the emotional and mental stress?

I don't know I feel like it sounds cliché where you just kinda take it day by day and revel in the small victories. Again it goes back to me just being grateful that I have the insurance that I have. I’m grateful that I don't have a lot of terrible side effects. Grateful that the lymph node that is positive for cancer, it's just to the right of whatever organs that it could bother.

I just try to focus on the positive of what’s happening around me. I don’t know where I heard this but growing up I always had this slogan: there’s always someone that’s done a lot more with a lot less. I just remind myself all the time that even though it’s bad, it could be worse.

Also, I treat my illness like my job in that when I'm dealing with my cancer, getting treatment or I'm not feeling it because something or another, that's like my work time. That's what I do then. It doesn't define who I am as a person at all.

How do you approach thinking about life and your future?

It's something that I still struggle with. I'm 33, right? I'd love to have a baby. I know I can't have my own baby, but I'd love to have children. I don't know if that's ever gonna happen for me because I don't know what my disease will be like for day to day.

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The thought about struggling with your mortality is so hard. I’ve gotten the worst diagnosis and I don’t know - remain resilient. Remain resilient. I will even say just fight hard. If you do what you’re supposed to do, things will fall in line however they are supposed to fall in line. But you’re not gonna survive and you’re not gonna beat this thing by feeling sorry for yourself or ignoring it. If you let the idea that stage 4B or whatever diagnosis, if you let that destroy who you are before it kills you, it’s already done what it came to do. I just feel like, well I feel good. I want to take advantage of every opportunity that I have.

The other thing, too: we’re two years from my diagnosis. Honestly, I could have had pretty much like six months and I'm better than I was when I started off. You never know what treatment is going to come up. You never know what new thing will happen, so just keep plugging away at it. I guess that's all. That's a very heavy topic for me to think about.

What kind of outside support was most helpful?

I love to cook and so does my husband, and so I definitely think it's the meal thing for a while. So many people were constantly asking, “What can we do?” It almost becomes another thing to manage as part of your illness . I guess I'm really lucky because my best friend -- she's also named Brittany not to get confused. She called herself the VIP or the VP of “Brittany's Cancer Corporation.” Basically, she did all requests for what can we do. So for this meal thing, you can sign up to bring the meal two days a week or something. We did that for a while. I like to cook. That's like one of the things that I can do to relieve my tension.

But I will say just being willing to come over and sit with me and hang out. Drink wine on my couch and not make me feel guilty for always having to have things at my house felt so good. Because you want to hang out but especially when you're actively going through certain types of treatment like radiation and chemo, you never know when you're gonna hit the wall and be like, “I'm done.”

The last thing you want is to be out in some bar in DC and have to Uber home and all that. It was really nice that for a good 8 months, my friends just formed a cocoon around me. We're gonna do stuff but only on my terms. It really helps.

Did you and your spouse have different styles in approaching treatment?

Yeah, for sure, which is good in a way. My husband - he is an Army guy. He sees a problem, he's like assess, analyze, problem, solution. I'm very what is it left-brain? I'm very emotional. I like to not necessarily deal with things very well. He just jumps right in.

This is also something that I think caregivers and friends can do for you is whenever I had a question about one of the medicines I was taking, or how effective things are, that can be a really dicey. The last thing you want to have to look up is how effective is this type of chemotherapy because honestly the results won't make you feel good.

It was really nice that I can always go to my husband or my best friend. “This has been hurting me.” Or whatever and they would actually do the research for me and kind of help. Be honest with me but I didn't end up having to fall into this terrible information overload about everything cancer-related. That really meant a lot to me. That's something a lot of caretakers can do.

How did the diagnosis impact your relationship?

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I would say it's impacted our marriage in mostly good ways. I'll be frank. I have cervical cancer. I've had a lot of radiations to my pelvis. It's certainly impacted our sex life. I just think honestly you're not feeling particularly attractive and beautiful. No matter what your partner says to you about how wrong you are, very challenging to get that out of your head.

So I definitely had to regain confidence in myself as my husband's sexual partner. That's a challenge and I'll say that's something I’m definitely still working on, which is okay.

Again, I feel very lucky because I don't know that we would ever be as close as we are if I, well, we were always very close. I never saw any issues, but I never imagine that you can be as close to someone as I am now with my husband because of what we've gone through.

Just conversations that we've been forced to have or just seeing him rise to the occasion every time. I really makes you grateful for someone. And same with my friends and family but my husband definitely the number one caregiver for me, so he deserves all of the credit.

How are you doing now?

I still technically have stage 4, but I am light years ahead of where I was when I was first diagnosed.

At the moment, our goal is to keep all of my cancer spots the size that they are because they're very small. I'm taking a regimen of chemotherapy every three weeks at this time, just to keep everything at bay.

Then still exploring other clinical trials, other options with different cancer centers, to see if there's anything out there that might lead to no evidence of disease, as opposed to just keeping things at bay. But I have to say, I'm pretty happy with where I'm at at the moment.

What’s your message to those dealing with the same or any cancer diagnosis?

I would just say you're doing great. Keep it up. I just look back at all of the doubt that I had every step of the way. I think that looking back on it the fact that all these cancer - I'm gonna say survivor 'cause I think everyday that you live with cancer, you're a cancer survivor.

[We’re] cancer survivors no matter what we do, every time you take a step in the right direction. Every time you wake up and decide to have a good day and get through what you need to get through, you're doing amazing. It's like that Kim Kardashian gif where her mom's like "You're doing amazing, sweetie." I would tell that to myself and I would tell that to every cancer patient. You're doing amazing. Don't give up on yourself.


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