Rare Cancer Stories
High-Grade Neuroendocrine Tumor (NET)
Symptoms, Diagnosis, Treatment
- Jennifer P.
- Neuroendocrine tumor
- High-grade (always malignant and metastatic)
- 4 (IV)
- 1st Symptoms:
- Pain in upper back that persisted for a few months
- Lump in the back
- Trouble walking
- Couldn’t lift right arm
- Couldn’t turn neck
- Pre-diagnosis tests:
- 2nd-line treatment:
- Immunotherapy (Keytruda)
Going from a point four years ago where I felt I had very little hope at recovering, I am now very happy and healthy. I still get the immunotherapy treatment and get regular scans but I’m living a normal life.
I’m just so grateful that there’s so much research and advancements being made in cancer, and just so much cause for hope.Jennifer P.
- Before Diagnosis
- What were your first symptoms?
- Describe the tests/scans you underwent
- How did you figure out where to go for treatment?
- How were you diagnosed?
- What was the official diagnosis?
- Was there staging?
- Did you have to break the news to loved ones?
- Describe the wait for treatment
- How was meeting the oncologist?
- Describe your first hospitalization
- How was the PICC line?
- How were the first few days there?
- Did you like being at a large academic hospital?
- Describe your experience with your oncologist
- Chemotherapy & Radiation
- Describe the chemotherapy regimen
- What was the chemotherapy cycle like?
- What were the chemotherapy side effects?
- Were there long term chemo side effects?
- Describe the hair loss
- Were you surprised by your reaction at losing hair?
- Describe the radiation therapy
- How often did you get scans throughout treatment?
- Describe the “scanxiety”
- What were the results of chemotherapy?
- Immunotherapy Treatment
- What did your oncologist say about immunotherapy options?
- Describe the “scanxiety” before immunotherapy
- Describe the immunotherapy treatment
- How was it trying to get coverage and/or access to immunotherapy?
- Your oncologist helped you get insurance for immunotherapy
- Insurance still covers the immunotherapy treatments?
- How has the immunotherapy been working the first few years?
- Describe the infusion and side effects
- Quality of Life
- Being a self-advocate is important
- What helped you get through the toughest times?
- How did your loved ones help you most?
- Advice: how to help cancer patients and caregivers
- Advice for loved ones: what to avoid saying to patients
- Advice: keep a journal or notebook
- Using alternative or holistic therapies
- Dealing with a Rare Cancer
What were your first symptoms?
I was in India traveling, going trekking in the Himalayas. I had noticed that my upper back was starting to hurt and I dismissed it during the trip. Thought it was yoga-related or workout-related. Didn’t really think too much of it. The pain was just like above my right shoulder and initially it did not feel different than pain I felt before. It just felt like tight, sore muscle, something like that, and that’s what it felt like for a while.
But then couple months later then it started to feel like it was just intensifying. It felt like maybe a deeper type of pain at that point. It definitely got worse, and then the pain that I felt in my neck that felt like I slept the wrong way, but in a really bad way, got worse. It never got better, so it’s that type of feeling.
Same thing with my lower back. It initially felt like pain I’d felt before, but then it just got much, much more intense. Those were the main things I felt. Then pain in my legs which was just a strange thing. The tumors in my spine were pushing down on nerves. It was really painful when I walked. That was definitely a sensation I had never felt before. I took Tylenol. It helped a little bit. I was definitely taking Tylenol or Advil until that point where I actually got the cancer diagnosis, and that’s when I went and I’m like, “Can I please get something else?” Because it was getting increasingly painful.
A few months later, it was around October, I made an appointment with an orthopedic to see what was going on with my back. By the time I went to see the orthopedic I had developed a lump which I learned later was swollen lymph nodes.
Describe the tests/scans you underwent
They couldn’t really tell what was going on with my back, but they saw the lymph node and then sent me for my first round of tests. So I got an ultrasound and then ended up having a needle biopsy of that. At that point, I had been very healthy. I went to One Medical, so I didn’t have a regular doctor who was able to handle this.
Over the next couple weeks, I met a wonderful doctor from UCSF and they did scans. I knew something was wrong. I had an MRI. The initial set I think it was for my spine. It was long. It was like an hour-and-a-half-type of an MRI. The MRI, it was fine. It’s just you have to lay still for a long time and I wasn’t feeling very well at that point, so that made it a little bit more challenging. But they gave me an Ativan or something like that so that made it a little bit better.
Then the CT scan was very quick. When I went to the hospital, they did three more MRIs. They did a brain MRI and a few others. And those, again, were all longer tests – an hour plus for each one. It’s very confined and it’s one of those things where you can’t move at all, or they’re going to have to start the test over. But it’s not painful. It’s just long.
How did you figure out where to go for treatment?
The last month or month-and-a-half before that, I was feeling, for lack of a better term, increasingly desperate. I knew there was something really wrong and it was just hard to get into the system and find the right doctor and even know what was going on. A lot of things happened that weren’t things that I planned or had in my control. One Medical ended up getting me two different appointments. One was at UCSF and then one was at another clinic in town that didn’t focus solely on cancer. They were more of just a general hospital system.
I met with both doctors and at UCSF. It was more complicated. I met with a head and neck surgeon. That’s not really what I needed, as it turned out, but he was helpful at getting the tests set up. He was just a very kind person and seemed like he was willing to help, but things were taking a while. It took a week or a-week-and-a-half to get the scans scheduled from the point I went to see him when I wasn’t feeling well at all.
And then I ended up having to go to One Medical to get pain medication and things like that. Still I wasn’t fully into UCSF at that point. And then I was going to this other clinic and at the other clinic, the doctor was much more aggressive. It was actually kind of odd. He really was trying to convince me that I should be working with him and that he would get my tests done right away. He would take me to the hospital.
So it was hard because here was one person who was saying that they would do stuff immediately and I felt like I needed that, but then UCSF was a cancer center. At that point, not going through any of this before, I had no idea how important it was. Was it more important just to start getting treatment or was it more important to be at a cancer center? And I had really no [idea]. The kind of cancer I was diagnosed with is called neuroendocrine cancer, which I had never heard of before. I just wasn’t really sure what to do.
I ended up talking to one of my colleagues. Her husband had gone through cancer and actually passed away. She said that they went to Stanford and she really recommended to me that I go to a cancer clinic. She didn’t really know anything about what I had either, but that was her advice to me.
Now whenever anybody asks me how do you think about it? I would always suggest, during the diagnosis stage, at a minimum, to go to a cancer center to really find out what you have and make sure that you’ve got the best thinking, research, most up-to-date [care].
Maybe, ultimately, it’s just fine to go to another clinic for your treatment, but at least to get started there. Or to get a second opinion. Especially if you have something that’s rare.
How were you diagnosed?
First was the email on my birthday, and then five days later after no one would call me back, getting into the clinic that day and trying to talk to a doctor.
The one who said, “You have neuroendocrine cancer,” was a physician’s assistant so she really couldn’t do anything other than tell me that. She was compassionate and that was at least nice to talk to somebody.
A week later I met the doctor who could see that diagnosis and he was able to share more information with me at that point. But he had no idea the extent of the disease because there had been no scanning done yet.
Finally, I got some scans done and MRIs done and I was sitting in my car, because my husband and mother-in-law were in the house and I just didn’t want to take the call in front of them. My oncologist told me that I had cancer all over my body: in my spine, in my bones, tumors in different places, and that he wanted to admit me to the hospital the next day for chemotherapy and start treatment.
So, very shocking start to all of it. And that happened over a period of months. From August, first time I felt anything and then I ended up in the hospital the week before Thanksgiving. So, it was pretty quick.
What was the official diagnosis?
It’s called neuroendocrine cancer. My understanding is that the kind I have is a rare kind of neuroendocrine cancer. So apparently one-and-a-half percent of all cancers are neuroendocrine. The normal way that it shows up is it’s gastrointestinal. It’s very slow growing and it’s hard to diagnose.
So I tried to limit my internet researching a lot because I was kind of freaked out about the whole thing, but anything I heard about neuroendocrine cancer sounded nothing at all like what I was experiencing. That was very confusing.
What I did find out later is that there are different types of neuroendocrine cancer. The kind that I have is called a high-grade neuroendocrine cancer, and it looks more like small-cell lung cancer. So very different characteristics than the more common type of neuroendocrine cancer.
It was very difficult to find any information out about it. I did go to a neuroendocrine seminar for a day at UCSF. They had 300 people in attendance and they had breakout sessions. One of the breakout sessions was for the high-grade. There were maybe 20 people there, and that included patients and caregivers. So it seems like it really is something that is hard to find much info about because it’s pretty rare.
Was there staging?
Stage 4 because it was in my bones and it had metastasized. They never did figure out exactly where the origin of it was. Unknown.
I actually don’t think that anybody ever said stage 4 to me, at that point. I think that was something I learned over time that when cancer has metastasized and it’s in your bones it’s stage IV. You know over time the doctor had talked about it in those terms.
But I think initially I don’t think they ever said the term. The words that I heard the most was first, I have cancer. Second, I have tumors in a lot of places, including my bones. And then third, it’s incurable. So it was like all those things together.
Putting together a puzzle, because again, I didn’t have that one trusted person. Probably a lot of people don’t have an oncologist for their specialty so I imagine it’s a pretty common experience.
Did you have to break the news to loved ones?
No, my husband knew. He knew. I shared the pain I was having and all of those things. I’d been very healthy up until a month before I went to the hospital. It wasn’t a big deal. It was just thing I’d experienced before.
It was only once I got to that last month where he was acutely aware what was going on because we had to go to the ER a couple of nights. Two nights I think we went for pain management.
Another night I was taking my shirt off and my arm made a sound and then I couldn’t move it. It was because this tumor, the one I was originally feeling, was consuming my shoulder. Something happened and when I went to the hospital there were all these things and I was in a lot of pain so I was not sleeping. He was a very active participant and all that was happening with me. It was undeniable at a certain point.
Describe the wait for treatment
That was incredibly frustrating and just disempowering. Usually I don’t have a lot of trouble getting access to resources. I have good insurance and personal resources and things like that. But it was like there was no way to speed this up that I could figure out, at least at that moment.
I remember the weekend I got the email, actually on my birthday, that said this is the result of my needle biopsy. The email said, “You need to go see a doctor at the head and neck clinic at the Helen Diller Cancer Center.”
And that was it. I called, no answer. I couldn’t get ahold of anybody. So all weekend, I’m wondering, “What does that mean? Does that for sure mean I have cancer or not?” And then, the following week comes around, nobody is calling me back from One Medical, I’m sure nobody probably wants to talk to me about this.
Finally, I called another doctor at One Medical because I was in so much pain by that point, and I really needed to get something for that. So I went in and that’s the point she said, “You have cancer.” So, she’s the one who actually told me I had neuroendocrine cancer. And then she was the one who helped find me a doctor.
But it was crazy how long it all took. And then, this head a neck surgeon, who’s just such a wonderful person at UCSF, he got me admitted into the hospital. Again, I know it was outside of his area of what he normally does, but he just was a good Samaritan and he did that for me.
How was meeting the oncologist?
Getting into the hospital, the head neck surgeon arranged a team to take care of me. Of course they were all new to me and they were hospital staff. They weren’t going to be the people who were going to be treating. So at that point, I didn’t meet my oncologist yet. But I was very happy to be in the hospital at that point because I knew something had to happen, and I was in a lot of pain at that point.
I was in the hospital for about a week and I didn’t end up meeting my oncologist until maybe a week after that. Once I met my oncologist that I was going to be working with and got into the hospital, it was such a relief to just figure out, ‘Okay. Somebody can help me, and I kind of have a path.’
But I just felt really lost at that point. Just feeling like maybe I’m not going to get medical care. It was a different feeling than I would’ve imagined.
Describe your first hospitalization
When I went to the hospital it was all about the logistics. Actually it was all about the logistics probably for the first five or six days I was in the hospital. They were trying to work on the pain management which was one of the initial things.
But then there was a lot of testing. So more MRIs. Just every day it was a new test for something different. That went on for a few days. But the big thing was starting chemotherapy, which was gonna happen a few days after I got there. And so I had two kinds of chemotherapy that were delivered over three days, initially, so that took three days.
How was the PICC line?
I got a central line or a PICC line, which completely freaked me out when they were describing the process to me. But it was not bad. My experience of it was, other than just hearing about it and kind of being freaked out, it was actually fine.
It made the IV process much easier in the blood draws and things like that so it was kind of a blessing because the regular blood draws and just the IV management and stuff like that was kind of painful. So I thought that was actually a little better.
How were the first few days there?
During all of this kind of activity and different doctors in and out, I didn’t have a primary oncologist or anything like that. It was just people rotating to take care of me.
Nobody really talked to me about my situation. Frankly, I think maybe I asked about it a few times but nobody seemed to really know or nobody seemed to really have my plan or what was going to be happening. They didn’t seem to have knowledge of that. Everybody was kind of doing their own tasks and things to get me started on treatment.
Thanksgiving morning, after I’d been in the hospital a week at that point, I got a blood clot from being in bed having cancer. An old injury I had, too, may have contributed to it. But my left leg in the hospital was swollen. It was double its normal size.
So I had an ultrasound and they said I had a blood clot that went from my ankle up to my stomach. So I had a huge blood clot. I was getting a daily shot in the hospital as a blood thinner, but then they needed to up that.
I was talking with the doctor, who I later found out was a resident, on Thanksgiving morning. She told me that I would have to have the shot every day, the rest of my life. And then there were some words that were kind of confusing, but essentially she was telling me at kind of the same time that this cancer was incurable. That my life wasn’t really gonna be that long and this would be a shot I’d have every day for the rest of my life.
So that was sort of the first I heard the words that this cancer wasn’t curable. It was at that moment pretty devastating to hear that. And I was kind of hysterical at that point. I think I had been pretty calm about everything, up to that point, but then I just kind of lost it, to hear that news.
In a weird, awkward way. I that think maybe that in my experience with the whole thing, at least up to that point, was everything was happening in a weird, awkward way. In talking with other people, I think that’s actually pretty common.
Did you like being at a large academic hospital?
I think that the fact that UCSF was a teaching hospital was definitely something that people had told me was a con about it. That’s what made it a little bit more distressing.
Every time someone came in my room there were a ton of them and they weren’t the primary person. It was a little bit hard to figure out who the groups of people were.
I definitely had a little bit of lack of faith at certain points. There was coordination and I didn’t know what the plan was at that point. I was feeling so poorly that I was kind of like you just have to surrender to the situation and be happy that I’m getting care.
That part was a little frustrating. I will say over time I have not experienced any issues whatsoever with USCF being a teaching hospital. There’s sometimes an extra person that is with my doctor but just haven’t experienced the same thing I experienced in the hospital where it was a lot of people so it has not been an issue for me since then.
There’s really great resources and different things, experimental treatments and things like that that happen there that I may not have had access to otherwise.
Describe your experience with your oncologist
My oncologist is at UCSF and he focuses on melanoma, head and neck cancers, and also just unusual situations. I think I ended up going to him because I fell in the category of unusual situation.
He has been incredible. From the minute that I met him, I knew he was the right doctor for me. He never sugarcoats things. He just doesn’t sugarcoat.
He’s honest and realistic, but he does it in a way that is very hopeful and very positive.
For example, when the treatment I had wasn’t working any longer, we knew from a set of scans. I then had another set of scans, and I asked him about the results. He said, “Well, it’s good we changed your treatment.” That’s all he said.
And that, for me, at that moment, was all I needed to hear. I didn’t need the details about what was growing or any of that. It was just we’re taking an action and it’s the right time for that. He has a very positive point of view on things. And he’s also innovative and he tries different things.
Chemotherapy & Radiation
Describe the chemotherapy regimen
When I was in the hospital, I had two kinds of chemotherapy. The first kind was called cisplatin (before switching to carboplatin) and then the second was called etoposide.
What I had learned about those two is that the platinum-based chemotherapies are very good for large or solid tumors; that was what I heard. But they make you feel bad is what I also heard. And then the etoposide I think makes your hair fall out. So I had both those things happen. My hair fell out. It was probably about a month, maybe five weeks, total, something like that, after chemotherapy started.
What was the chemotherapy cycle like?
I had the cisplatin and the etoposide. I had it from Monday. I think the cisplatin was just the first day, and then the etoposide was the first, second, and third day. So Day Two and Day Three, I felt really bad. Maybe into Day4four, even, which I think is from the cisplatin. Then I started to feel a little bit better the next day. But I just laid in bed. I just didn’t feel like doing anything on those days.
When I left the hospital, it probably took me maybe a week or a week-and-a-half after that treatment to start feeling a little bit better, and able to go out and do things. Then I had my second round three weeks later, which was the same thing, but it was outpatient at that point. So I had the cisplatin on Monday, the etoposide Monday and then etoposide [again] Tuesday and Wednesday.
That time, I got very sick. They gave me something [for anti-nausea] in the hospital, but it wasn’t quite the same [as the first cycle]. So I felt better a few days after the chemotherapy, but then I felt really terrible. I was going to the hospital every day to get IVs for just fluids because I had so much fluid loss.
Within a couple days, I could hardly walk. I just felt really, really horrible. Just completely depleted from that. So after that, then my doctor switched me to a different chemotherapy which he said should be better. I got switched to carboplatin and also stayed with the etoposide for about, all in total, seven months, from November through June.
The carboplatin, at first, was wonderful. The first couple of treatments I had was like night and day compared to the cisplatin. That was really good but then after I had four or five rounds of it, I just started to get extremely sick. Almost to the point where I was sick most of the time, even in between cycles as we got to the later spring. I ended up spending a lot of time in bed at that point.
My blood counts got low, both white and red, and so I was getting regular blood transfusions, but still, it was just a time where I was very low activity, really couldn’t do much of anything at that point.
What were the chemotherapy side effects?
Nausea, fatigue. Definitely nausea. I always had a lot of anti-nausea medication. I was taking a ton of different [ones]. My husband kept the log because I had so many different pills. But, still, I was just nauseous. At any point in time, I could just vomit.
I would say half of March, all of April, a lot of May. It was probably two-and-a-half months, something like that. Maybe three months, where I pretty much [did] very little activity. Some days I would only get up to use the restroom.
That was kind of it. Other days I felt a little bit better, but it was a struggle even to go to the clinic most of the time and get scans and things like that. I just wasn’t feeling well at all.
Were there long term chemo side effects?
I’d say even after I stopped chemotherapy in June and moved to [immunotherapy], I had lingering side effects from that [chemo] for awhile. Neuropathy in my feet mostly. Just not feeling that great. And weak, for lack of a better term. I wasn’t active during that time. It took awhile to start feeling stronger in my body and get back to exercising and just to start to feel better. Takes awhile.
Describe the hair loss
The worst thing was when it was coming out. My hair was very long at that point and I was having to brush my hair out. I was feeling very bad at that point. I remember brushing it out and my husband was flushing it down the toilet. That part felt extremely traumatic to me at the moment.
Your scalp feels very sensitive. I think after chemotherapy a lot of parts of your body feel more sensitive. I definitely felt my scalp felt more sensitive, my feet, extremities. There are definitely a lot of body sensations during treatment that were different.
I think once it was gone I wore a hat mostly. I had wigs which I wore once in awhile but not mostly. Mostly, I was not feeling well that whole time.
Once I switched treatments to the immunotherapy treatment then my hair started to grow back. At that point it was kind of nice to have short hair for awhile. I was really longing for longer hair but there was also some parts of having short hair that felt very different to me. There was something that was kind of nice to have something different for awhile. Overall, that whole part of it is a very unpleasant aspect of cancer for sure.
Were you surprised by your reaction at losing hair?
No, even before it happened I knew it was going to feel bad. The other thing is when you lose your hair you look sick and it’s hard to deny that you’re sick at that point.
So I think that’s part of it, too. You’re reminded every time you look in the mirror like, “I’m sick and I look like shit.” The constant reminder is also just hard mentally.
Describe the radiation therapy
I had two different types of radiation. I had some tumors in my lower spine and I think it was the ones that were impacting my walking. I got maybe 12 radiation treatments to the spot on my lower back. That was during my first cycle of chemotherapy outside of the hospital. It was a point where I was feeling very, very sick. I would go everyday and get my treatment.
Actually, other than the part where I was feeling sick already from the chemotherapy and it was a rough time to be walking around and doing anything, for me that radiation was a small spot on my body and it was a short duration enough so I didn’t have any adverse side effects. Other than the skin getting burnt a little, it was very minor because it was so short for me. So, pretty minor effects there.
For one of the tumors that was very close to my brain, when I first went to the hospital they said I couldn’t eat because they had to do this brain MRI to see whether this tumor was close enough to my brain that I had to have surgery that night. Fortunately the MRI showed it wasn’t creating an immediate issue so I never did have surgery.
I ended up having this “cyber knife” which is just radiation. I think it’s just a high-tech name but it’s not a real knife, it’s just radiation knife terminology I guess. It was one treatment, one hour and they made a face mask for me that is like a cast of my face.
When I actually had it, they bolted it down on top of me. My head was obviously immobile because it was covered with this Freddy Krueger mask. But it was a very easy treatment, it was just one hour. I think I had some kind of difficulty for a day swallowing and some little weird effects, but nothing major around that.
How often did you get scans throughout treatment?
I had scans pretty much throughout the duration, I think every 12 weeks.
When I was on chemotherapy most of the time I had some kind of a PET/CT scan and those required that I would drink something before, like a special [dye] before the test.
Then I always had an IV with the contrast, so those were always part of those scans that I did. When you’re not feeling well, to have to drink something, that was sort of unpleasant.
Describe the “scanxiety”
I think when I think back to the scans that I had initially, during the first year of my treatment, there was a lot of anxiety. It wasn’t always at the time of the scan itself, it was getting the results that created most of the anxiety.
The first time when I was not feeling well from chemotherapy and I had to get a scan, I had to drink something and then get an IV. There was definitely a point where I lost it. It was very overwhelming and I was physically not feeling well. I think the stress of it and it was happening with another person in the center at the same time. I saw a lot of people kind of losing it. I think same thing – combination of stress and physical symptoms, all that happening, I think that’s definitely a point of a lot of stress.
[It was stressful] meeting with the doctor to get results, especially not knowing if the chemotherapy was going to work at all. Then I think I had the treatment or the next one where it stopped working, then I had another [scan] and I was pretty sure it was going to be bad. That was a treatment that I was told wasn’t going to work for me. So while it was obviously very emotional and important to me, the one that was really important to me was the immunotherapy treatment and was that going to work? Because that was my hope. That’s what I had available to me as a potential option.
What were the results of chemotherapy?
The chemo stopped working. After the first 12 weeks of chemo, my scans showed improvement. A lot of improvement actually. And then, the next set of scans, three months later, showed cancer was growing back again.
There were no other conventional treatments for the type of cancer I had at that point and so my doctor was trying to get access to another type of treatment for me. During that time though, even when the chemo wasn’t working, it was doing something at least. Maybe slowing down the cancer a bit so I stayed on it for a little bit longer.
Then once I got a different treatment, then the chemotherapy stopped. It just had run its course for me.
What did your oncologist say about immunotherapy options?
Originally when I met my oncologist and we talked about what I should expect, the type of cancer that I have, and my treatment plan, he told me that this type of cancer usually responds well to chemotherapy, but that it doesn’t usually respond indefinitely.
From the start, I knew that I would need to get something other than chemotherapy in order to have a longer term chance at survival. It wasn’t a big surprise then, when the first scans showed that the chemotherapy was working, because he said it usually works pretty well up front. And so true to his prediction, that’s what happened. Then, three months later, true to his prediction, it had stopped working as well. So, that wasn’t all that surprising at that point.
He set the expectation with me, up front, that chemotherapy wasn’t going to be the end for me with this cancer.
He did set the stage, very early on, that he had been prescribing to patients immunotherapy treatments. His primary practice was melanoma. There were certain types of immunotherapy that were approved for melanoma. He had some promising studies on personal examples with the immunotherapy drugs and certain types of cancer that he thought could translate over into the type of cancer that I had.
Describe the “scanxiety” before immunotherapy
The weeks leading up to it was definitely very stressful. I think I went to Tassajara which is a zen center for three or four days before I had my scan. By chance. I had a retreat planned that weekend down at Mount Madonna so I had it sandwiched in-between some things. Just trying to do whatever I can to keep in the best emotional state around it.
Fortunately for me I got good news for that one. The first one was incredible to see there was positive momentum and the second one to find that it was mostly in remission.
There’s definitely been some mixed results along the way where something kind of looks like something new is showing up or maybe there’s more testing required and so it’s definitely always a little bit of an emotional roller coaster because that’s the check in point: is this working or not working?
That’s when you feel the most vulnerable. And the situation becomes again very real. Because sometimes it can be easy to just go back to your normal life. Scans to me always brings you right back to your mortality and what’s happening.
Describe the immunotherapy treatment
The immunotherapy treatment that I ended up getting and am still getting is called Pembrolizumab. Keytruda is the more common name that you will hear so I’ll just use that as we’re talking.
At that point, it wasn’t approved for neuroendocrine cancer. I don’t think it’s even now actually. So there was a question about getting access to it. He had said that from the start.
Even when I was still in chemotherapy and it seemed to be working, he advised me and my husband to start looking for clinical trials, to get access that way.
He said there’s three ways I can get access. One is clinical trials. Two is the insurance company would pay for it, even though it wasn’t approved. And third, we could pay. It’s like $20,000 plus, per treatment. It’s an every three week treatment so paying ourselves wasn’t a great option.
How was it trying to get coverage and/or access to immunotherapy?
We did start down the insurance path pretty early and then it got denied right away.
Then we started to do the clinical trial research which is really tough. It’s a huge database clinical trial. It’s a massive database that’s not sorted very well and so we were looking for solid tumors studies with a couple different search terms our doctor gave us.
My friends helped and my husband and I were working on it when we could do it. We found some that seemed promising and my doctor made a few calls. We made a few calls, but nothing really panned out with that.
Your oncologist helped you get insurance for immunotherapy
My doctor kept calling the insurance company. He kept calling the insurance company and they kept saying no.
Then I was in his office in the spring and he was dictating a letter to the insurance company. He dictates commonly so you can hear as he is writing, essentially. He warned me up front, “Maybe it’s a little shocking to hear but, I’ve got to put this plea in.”
Basically he said, “We have a young woman here who doesn’t have any other options and she’s running out of time.” Essentially those were the words that he used so it was really shocking, sitting there and hearing those words, but I am appreciative that he put in another plea to the insurance company.
A couple of weeks after that, I was in the infusion center getting chemotherapy that wasn’t working, but everyone felt we had to do something. And he came running up to the infusion center and said that he talked to a doctor at the insurance company after-hours and they agreed to fund six treatments. It was really exciting. That was early June, about three years ago.
Then I switched over to the immunotherapy treatment and I had my first scans about three months into that and they showed improvement. At that point, my oncologist said he thought I would live years instead of months.
It was really amazing to get that news.
Three months after that, I had scans again and it showed the cancer was in remission at that point. Most of the tumors were gone. There’s a couple of things here and there but, for the most part it’s gone.
Insurance still covers the immunotherapy treatments?
I get a letter every 6 treatments and it says we’ll cover 6 more treatments. Fortunately, insurance has been covering it.
I think my doctor thought as soon as they could see it worked that they would kind of have to cover it at that point.
I’m sure they don’t have to do anything but they would be more likely, more inclined to cover it. He had to make the case that it could really work for me for them to even say they would authorize it.
I would only have access during the trial then so I’d still have to get access. This was the best option and he told me that this was the least likely option upfront. So it’s the best option for me.
My oncologist has told me that there’s more being made available by the manufacturers now for compassionate care so he thinks it is easier to access now than it was a few years ago, so that is a good thing.
How has the immunotherapy been working the first few years?
It’s been pretty stable since that point. I still get the immunotherapy treatment. I’m now on a six-week cycle and get scans every three or four months and so far, so good on that. I feel very fortunate. I am extremely lucky.
Describe the infusion and side effects
It’s an infusion and so I get an IV. It’s about 30 minutes so it’s actually really easy. I’ve had very limited side effects. A little bit of fatigue maybe, for a while my blood counts were off, but now they seem to be back under control.
That was a major change – going from a point of just feeling like crap with the chemotherapy to going to the immunotherapy. It was a big change.
I’m very lucky. I live a normal life. I just go get my infusion every six weeks. I get scans, I see my doctor, but other than that I don’t have any restrictions or anything that’s a major difference from what my life was like before.
Quality of Life
Being a self-advocate is important
I don’t think I ever had that happen with my oncologist, but there were definitely times throughout my treatment where I maybe got conflicting information from a physician’s assistant or from a nurse that I had to speak up about.
I think it’s really important to listen. I think there were times when he said, “We’re going to do something,” and then it seemed like we were doing something different. So, just to clarify. Was this intentional? Was there a change? Why did it change?
What helped you get through the toughest times?
I think what was helpful to me throughout was support of friends and family. That was super critical. My husband was cooking for me, and, basically, doing everything for me. I just had no ability to do any of that. My dogs made me feel better. It made me feel better to open up the door to our bedroom and smell the fresh air. Things like that. But yeah, when I felt so physically ill, there was just not a lot at those moments. I read. I didn’t watch a lot of TV, but I definitely read a lot.
How did your loved ones help you most?
Keeping up with friends. That was great. That part was nice, to get messages from friends and be able to respond as I could, and things like that. The support was very meaningful. When you feel bad, and you have people reach out to you, that makes a big difference.
Advice: how to help cancer patients and caregivers
The number one thing that I always say to people, the most important thing, is just do whatever you can do.
Don’t worry about bothering somebody. Reach out in some way to show that support versus just saying, “I don’t want to bother them.”
You know, an email, a text. That is never going to bother somebody. It’s nice if you say something like, “I don’t need you to respond,” or some kind of understanding that maybe nothing will happen. “I know you’re not feeling well,” or whatever.
I think anything you do with love and support that is an outreach is helpful. I would always use that as a guiding principle versus backing away. Because there were people I know who were definitely freaked out, to even engage in any discussion at all, whether they had their own reaction to it, or they didn’t want to bother me.
But I really appreciated the people who would reach out. I think a lot of people will say, “What can I do to help?” And sometimes the tone can create stress, where I felt like I needed to ask them to do something.
So I think it’s nice if you offer something specific. You know, “Can I bring you a meal?” Whatever it may be.
And again, even if that’s something that they don’t need, then they can just say no, and then you don’t have to think about it. But I do remember feeling a little bit stressed sometimes, when people kept offering, and I was like, “Oh, I feel like I need to … “. I could tell they really want to do something for me. But, again, I’d still take that any day, over somebody who just [ignores] the situation.
Advice for loved ones: what to avoid saying to patients
Something that I would always advise is when it comes to alternative treatments or your sad stories, just to be careful about the information that you share and the way that you do it. Definitely sad stories should be off limits because it can be really upsetting to hear that someone’s treatment didn’t go well and all that.
That’s a tough thing to hear sometimes, most times actually. On the alternative treatments, if it’s a suggestion or something that you heard about that you want to pass on, I think that’s just great. But with pressure or something that feels like pressure, it can just make you feel worse.
I know there were times where I just felt so bad, like I could barely eat anything, and people were making suggestions. Whether it would be fast for a week before treatment or don’t eat anything white because that’s going to cause the cancer to grow. Those things put a lot of stress on you because you’re already feeling concerned about this happening.
And then, the thought of, “I’m making it worse” and it’s hard to know at any given time. One thing that surprised me was I lost 25 pounds in a couple of weeks. It was just the importance of keeping weight and weighing, having the strength in your body, and things like that. And sometimes, you can’t really eat things that you would normally view as healthy, or which we all view as healthy. There’s just points where that’s not what you can stomach. So stop pressuring, or putting expectations on somebody around what they’re doing.
Advice: keep a journal or notebook
I found it very helpful to keep a notebook, have my husband keep a notebook and always write down notes after every appointment, at least initially. I don’t do that anymore but it’s because there’s so much information coming at you and I still have all my notes and things like that. I think that is critical.
Also, I do think there’s so many medical professionals that get involved with your care and they do a great job of always making sure they know your name and all that information that’s in the system, but it seems like sometimes they don’t quite have things right in terms of what was agreed upon. I think keeping your own notes and just double-checking if something doesn’t sound right, or sounds different than what you heard, is really important. That was my experience. The note-taking is important.
Using alternative or holistic therapies
Alternative therapies or supporting therapies is just something that I thought was so important for me during treatment.
I started to get regular acupuncture. I thought that was very supportive for what I was going through. I never really knew exactly how it worked but it’s one of those things that’s kind of empowering for me, to feel like I’m doing something.
I felt it produce benefits. Focusing on diet [was] not always [helpful] because there were points where that just didn’t work for me, but [acupuncture] always felt empowering to me – to do things like that.
I visit a doctor at the Osher Center, Dr. Donald Abrams. He’s been an incredible resource around integrating the western therapies with the complementary therapies and making sure that when I take my Chinese herbs it’s not going to have an impact. So he’s a really good bridge. For me that was extremely important. It made me feel a lot better like I wasn’t missing out on anything big to help myself. He’s an oncologist as well as alternative physician.
Dealing with a Rare Cancer
There’s little information
My experience with a rare cancer was I could find very little information. I feel lucky that I had a doctor that I trusted. Even after doing research and looking more, I don’t think there are other answers out there for me. This is a bigger topic but at least in the moment I don’t think there are a lot of other answers out there for me.
Lack of information sharing and standard of care
I think there’s a major issue with information sharing. A major issue. I’ll diverge to that for one moment because I think it’s important.
I’ve been very surprised at the reaction when I’ve told medical professionals and doctors about my situation. This great result I’ve had from this treatment. Some of it’s been support groups or information settings with neuroendocrine cancer. The reaction which I might expect to be, “Oh my goodness this is incredible, tell me more” and curiosity is often to shut it down and say it’s a very rare situation, and it probably isn’t going to be like that for most people.
I’ve been surprised that there isn’t more information sharing about it or openness to sharing. It seems like the tendency seems to be to downplay it and maybe avoid getting up hopes. But it makes me really worried about how this information is getting shared just as a general matter.
I think with privacy issues and things like that, the sharing is not very good right now. It makes me very worried about what other things are out there that could be helping. In my own situation, I don’t have a roadmap forward. I’m still on this treatment. I don’t think that many people are on it that long so when I ask my doctor what’s next he says it’s uncharted water. I’m always thinking I may need something else in the future so it just becomes a lot more personal to think about sharing info.
It gets back to the feeling I had on accessing the medical system to start with. I feel like getting information about others who have rare cancers or unique situations, I think it’s really tough.
Advice to others: dealing with a rare cancer diagnosis
I think you might have to do your own research.
I feel I’m very fortunate because I have a doctor who is at a teaching hospital and he works with rare cancers. He’s able to look at not just the type of cancer but the characteristics of it and look at treatments for that. But if I didn’t have him, I’m just imagining, I’d be doing a lot more research and probably visiting other large cancer centers for 2nd, 3rd, 4th opinions. I think there’s got to be a wealth of resources at some of the best cancer centers, as well.
I’m not sure to be honest. I know there are organizations out there that focus on rare cancers so I’d probably focus on that. I do think sometimes what if my situation changes? What if my doctor’s not always there? What would I do? Because the other doctors that I’ve talked to don’t give me the same level of confidence that I have in my oncologist.
I definitely try to not forget about it. I definitely try to remember and very grateful for everyday. I do certain things in my daily routine. I have a gratitude journal, things like that, so I can always remember because I can be very caught up in the day to day.
I try to focus a lot on my health and wellness, my diet, controlling the things that I can still control. Try to do things for myself that makes me feel better about it. Something all along that I found helpful is to do certain things for my health and wellness, even when I was feeling horrible and not sure if they were working or anything like that. Those things can be going to bed at a certain time and trying to be very focused on getting my sleep, taking supplements, getting acupuncture, going to yoga, making sure I eat my fruits and vegetables. All things like that staying active. When I do those things for myself, it makes me feel better because I feel like I’m doing the things that I can control and I won’t have the regret then that I didn’t do the things that I could do for myself. I’m not perfect. It’s just trying to do some of those things that definitely helps keep my stress under control to some extent. It helps me remember for sure.
But I’d say my job is pretty demanding. I’ve gone back. I try to be more careful about my hours. I try not to take red eye flights and do things that interfere with my sleep. That’s probably the biggest thing I’ve changed. Before, I was a 4 to 5 hour a night sleep person and now I definitely make sure that I get the time to get proper rest and create some boundaries around that. That would be a big change from before.
I’m definitely a lot more focused on my family and making sure my relationships – that was what was so important to me when I wasn’t feeling well. They were there for me. So just trying to remember how to cultivate my friend relationships, my family relationships, because that’s really what’s important. So those things stay really front and center for me.
Advice on how to deal with this kind of survivorship?
It definitely gets easier over time, the longer that I’ve had good results and things like that. It’s much less stressful now than it was before. It’s much better now. I think throughout the whole process – meditation, yoga, support of friends and family, realizing you can’t control things. There’s just so many kind of things.
The other thing that just stands out to me during the past couple years is there were times where I was sure I was going to be the first one to die or at least that was the most likely situation. Then other people passed away that I would have never expected.
It’s easy to feel your mortality in the moment and feel like the line between line and death is not that far apart for you at the moment. But it’s true for anybody really. So that was something that’s really stuck with me. It’s like you may feel like you’re the most pitiful in the worst position at a point in time but it’s probably not true.
Your message for other cancer patients
Hi, my name is Jennifer Petersen. I was diagnosed with neuroendocrine cancer four years ago. When I was diagnosed I was told that chemotherapy, the conventional treatment for me, would work for a while probably. Then it probably wouldn’t work any longer and my only hope was an experimental treatment.
Fortunately for me, I was able to get access to that experimental treatment and it worked for me.
Going from a point four years ago where I felt I had very little hope at recovering, I am now very happy and healthy. I still get the immunotherapy treatment and get regular scans but I’m living a normal life. I’m just so grateful that there’s so much research and advancements being made in cancer, and just so much cause for hope.
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