What Patients With GIST Should Know About Their Disease

Dr. Breelyn Wilky highlights the importance of expert care, mutation testing and advocacy support for patients with gastrointestinal stromal tumors.

Next month, on July 13th, gastrointestinal stromal tumors (GIST) Awareness Day will be observed by patients, caregivers and physicians, serving as a continual reminder to investigators to keep pushing the research envelope and to patients that hope is on the horizon.

To further discuss the topic of GIST, a rare form of cancer that develops in the digestive tract, CURE sat down for an interview with Dr. Breelyn Wilky, an associate professor of medicine in the Department of Medical Oncology at the University of Colorado, Anschutz Medical Campus. In the interview, she discussed some of the most recent advancements in GIST treatment, highlighted patient resources, and touched on the importance of personalized therapy.

“Learn about your disease and the research that's being done. There is more research being done, and more new therapies are being developed. The research, understanding, and our tools and expertise are so much better for GIST than most of our other sarcoma types,” Wilky emphasized in the interview.

Wilky also serves as the director of Sarcoma Medical Oncology, deputy associate director for Clinical Research, and the Cheryl Bennett and McNeilly Family Endowed Chair in Sarcoma Research at the University of Colorado Cancer Center, UCHealth.

CURE: What are the most promising advances in GIST treatment right now? What should patients know?

Wilky: The key thing for patients to know, especially as we're talking about just awareness day, is to get educated. Learn about your disease and the research that's being done. There is more research being done, and more new therapies are being developed. The research, understanding, and our tools and expertise are so much better for GIST than most of our other sarcoma types. Therefore, it's worth making sure you get a second opinion or see a provider who really has a lot of experience with GIST.

You don't have to stay there forever, but at least get that initial opinion, have your whole case reviewed, and get educated about your current treatment options, what they might be in the future, and any considerations for your particular tumor that you need to know about. This changes therapy, and there's so much movement in this research space. It's impossible, or at least very, very difficult, for patients to navigate some of the databases out there; even doctors sometimes have trouble finding every clinical trial on clinicaltrials.gov.

The key thing is to see a GIST specialist who has been in these circles, who has gone to the meetings and heard from the companies that are developing these latest and greatest drugs. Get yourself an expert in your corner.

For patients who are newly diagnosed with GIST, what resources or support systems do you recommend they turn to first?

You should always take advantage of patient advocacy groups like The Life Raft Group, which is one of the best-run patient advocacy foundations I've ever worked with. These guys eat, breathe, live, and sleep GIST, research, patient care, and all of these things. They are a tremendous source of information for newcomers or people who are newly diagnosed, to ensure you have somebody else in your corner who is advocating for you and helping you think about things you might not have considered before.

How is personalized therapy changing the outlook for people living with gist?

The key thing for patients is to recognize that even though you have GIST, and this is the most common tumor, even within GIST, everybody's a little bit different. I describe my patients as snowflakes: while you may all be snowy and shaped prettily and all those things, everyone's a little bit different, and that's super, super important. We're only learning more about how important it is as we start to think about prognosis and treatments.

Some of the factors that play into this — how you're going to do, how your disease will behave, what therapies might be good for you — come down to simple things like how big your tumor was, where it was located along the GI tract, or how quickly it was growing (what we call the mitotic rate). Those are some of the early things we use to establish these risk scores and predict outcomes.

There's also the role of mutation testing figuring out where in your GIST cell the mutation happened. As I mentioned, 80% of patients have an activated or ‘flipped on’ switch for KIT, and 80% of those have the same sort of spot where the mutation is likely to happen. But even within that, there are subtle differences.

Getting your mutation report, discussing that with your doctors, and understanding your treatment options are crucial. You should be asking questions like, ‘Is there any evidence that certain drugs might work better for my particular tumor than others?’

Transcript has been edited for clarity and conciseness.

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