Living with Gastrointestinal Stromal Tumors: A Rare Patient Story

Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format.

What are Gastrointestinal Stromal Tumors?

Gastrointestinal stromal tumors (GISTs) are a form of tumor that can appear in the digestive tract. These tumors appear in the interstitial cells of Cajal, which control smooth muscle activity. These tumors are connected to mutations that affect the KIT gene or the PDGFRA gene in the vast majority of cases. In most cases, these mutations appear sporadically, and are only rarely inherited. Typically they occur as part of another genetic disorder when they are inherited. They can occur in a number of locations along the digestive tract, most often the stomach, small intestine, or esophagus. Symptoms may include abdominal pain, difficulty swallowing, liver metastases, and gastrointestinal bleeding. Treatment usually involves surgery or medications when surgery is not possible. Gastrointestinal stromal tumors generally do not respond to radiation or chemotherapy. To learn more about gastrointestinal stromal tumors, click here.

Rebecca’s Story

What is your earliest memory of your condition?

I’ve always had a finicky stomach. I just always thought it was anxiety. When I was very young I used to feel sick to my stomach all the time, but everyone just thought I was avoiding things. I really did feel sick a lot when I was young. 

Several times in my early 20s I was treated for ulcers, although there was no test for H. pylori then – an assumption was made, and the treatment seemed effective at the time. 

But in mid 2013 I was under a huge amount of stress due to an employer that I had to sue in labor court, and my primary care doctor initially treated me for gastritis, for almost a full year. It didn’t get better and finally scans and an endoscopic biopsy showed I had metastatic GIST (throughout my stomach and liver), at the end of July in 2014.

What were your first thoughts when you learned you had the condition?

I was strangely calm when I got the call from the gastroenterologist. I felt like at least I finally knew what was happening to me. I immediately began researching the treatment plan, and was actually relieved to discover that treatment wasn’t traditional chemotherapy and radiation, but rather a pill to take once daily – a TKI, tyrosine kinase inhibitor. When I followed up with my assigned oncologist, I already knew what drug he would prescribe, and what to expect from it.

What is your biggest worry regarding your condition?

I am fortunate to have very good insurance through my partner’s employer, but the position may end soon, which means I need to figure out what next. I am a million dollar plus patient. The treatments GISTers receive are radically expensive. So financial issues are a concern because it means it is very difficult for my partner to change jobs, knowing we will lose the excellent coverage we have currently. I am eligible for Medicare, but there is no way I can pay the 20% copay for medication. The drug I’m currently taking is billed to the insurance company at $67,000.00 per month. Yes, really.

Was it difficult to get the diagnosis? Did you see several doctors? Go to more than one health care facility?

Once the scans were done and masses seen it was obvious that I needed an endoscopy to find out what exactly the cancer was. We waited almost a year before getting to that point. When my “gastritis” didn’t resolve, we went further with the testing. I don’t blame the medical staff at all. I have a very rare cancer, and symptoms are really common for lots of things. I never had any overt bleeding to display, which would have been more obvious something was wrong. In any case, I have seen numerous medical and surgical oncologists, for a lot of different reasons. I’ve been treated at: Kaiser Permanente, St. Joseph’s Medical, Sutter Medical, UCSF Cancer Center, OHSU Cancer  Center, Stanford Cancer Center, and now Ridley Tree Cancer Center, and anticipating (hopefully) treatment at UCSD/California Protons.

What did the doctor tell you about the condition?

It has no cure, but is treated like a chronic condition. The first drug in line (Gleevec/imatinib) is a miracle drug, but my high mitotic rate and metastatic tumors meant the Gleevec probably wouldn’t work more than about 3 years. There are other drugs in the typical protocol, but they are misery inducing in comparison to the Gleevec, which really wasn’t too bad after about 3 months of adjustment.

Have you had to explain your condition to a health care worker who wasn’t familiar with it?

Many times. Even most oncologists are not familiar with GIST. An oncology nurse who assisted during CT scans said he had never heard of it in his over 20 years in oncology.

What coping techniques have you found the most helpful?

I try to live my life as normally as possible. I am not my cancer. The rest of my body still needs care too, not just the cancerous parts.

I don’t have the strength or stamina I once had, but I stay physically active in a number of different ways. I talk with other GISTers, friends, and family. I meditate, I sing, I practice art (badly).  I try to treat this condition as if it has something to tell me, something I need to be aware of. In traditional Chinese medicine, problems with the liver are associated with anger, fear, frustration – all of which I was feeling intensely prior to the diagnosis. They would consider this to be stagnant energy. So, I do some tai chi exercises that feel like they open up that area, and let my energy flow better.

Are you part of any advocacy groups? How did you find them and how did they help?

I participate in a forum on Facebook, called GSI – GIST Support International. Wonderful people who have been through a lot of scenes and are willing to talk ideas out, or point you in different directions. One of the forum members is a woman who has been on Gleevec for 20 years – she was just this close to death when Gleevec became available through a trial, and it saved her life. There are other very knowledgeable people – GISTers as well as their friends and family. There is another group called the Life Raft Group, I don’t interact with people there for support but rather I just use their files for further research. I have been trained to do certain types of research, so it wasn’t difficult to find these forums.

If you just met someone newly diagnosed with it what one thing do you think is most important to tell them?

I would tell them that the whole experience can be overwhelming, and yes, painful too, but that there are things to alleviate a good part of this. And also, it is important to study and understand as much as you can for your particular issue, and to advocate for oneself. It is helpful to have someone who can back you up. Keep good notes, save copies of your reports and scans. Do not assume your oncologist knows everything, this is a rapidly changing field. Change doctors if you can’t communicate easily with your team. There are times to push for clarity, and there are times to be passive and just bide your time. Get your affairs in order. Treat yourself well. Clear up any regrets you may have had. Try to be flexible.

Looking back, what do you wish you could have told yourself?

Now that it’s been eight years, I feel like I wish I could have told myself that I would last this long. I never know what will happen next, it’s very difficult to plan anything. But I might have been more willing to engage in some sort of long term on line studies had I known I would live this long. Because of improvements in treatments, GISTers are living longer.

What do you most hope for in the future?

I don’t make firm plans because I can’t count on my health. I do hope for a stable condition, or even a cure. I hope to continue my studies and eventually launch a small business.

What bugs you the most about other peoples’ reactions?

Big issue. People are scared of death. So they tend to shy away. The other thing is the response of “have you tried xyz?” “you should blah blah blah”. Yes, believe me, I know they mean well, but yes, I’ve read a lot of material. I know what I have been up against.

Who has been your greatest support and how?

Hands down, my partner of 20+ years. I know some people’s partners abandon them. Mine has been there every step of the way.

Some rare conditions have no treatment, some have treatments only for symptoms, and others seem to have one new medication after another, and people are perplexed about their choices, side effects and other options. What  has been your experience with treatment?

The first and last drugs were the best as far as tolerability and efficacy. The ones in between made me sicker than the cancer itself. I had three major surgeries which were necessary to prolong life, but misery inducing. My mitotic rate is pretty high, so the cancer mutates, and the drugs can’t keep up. I am pursuing a new treatment, a proton beam therapy, because there is no other options right now except off label drugs that have just horrible side effects. I am currently waiting for word back from my insurance company. 

Click here to learn more about The Life Raft Group.

Click here to learn more about GIST Support International.

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