Second Opinions Key for Those Newly Diagnosed With GIST

Dr. Breelyn Wilky of the University of Colorado said patients newly diagnosed with gastrointestinal stromal tumor (GIST) should know they’re not alone.

She encouraged connecting with others through social media or patient groups, like the Life Raft Group, which offers trusted information and support.

Dr. Wilky also emphasized the value of seeing a GIST expert, even if most care happens locally. Second opinions from sarcoma centers can be reassuring, and travel grants are available through advocacy groups.

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.

Transcript

What advice would you give to someone newly diagnosed with just who may feel overwhelmed by the rarity of their condition?

You are not alone. Rare tumors may be uncommon overall. but they’re not rare to the people living with them, or to the doctors who treat them. I think the key is recognizing that there are other patients like you out there. Especially when you're newly diagnosed, connecting with other patients can be incredibly valuable.

There are multiple Facebook groups and other social media platforms where you can find patients from all over the world. Some of the advice you'll get there is helpful, some of it less so, so you'll need to figure out what works best for you.

The patient advocacy group Life Raft Group is an incredibly helpful resource. They've been supporting patients for 25 years; they help people live with GIST, learn about treatments, and connect with the right doctors and specialists. I always recommend my new patients check out their website and make connections there.

Another key point is to get yourself an expert. Think of it like this: if you needed heart surgery, you’d want a surgeon who’s done a lot of heart surgeries, not someone who’s only done one or two recently. Experience and familiarity matter. My patients often tell me what a relief it is to speak with someone for whom GIST isn’t rare, where a third of my clinic is made up of patients with GIST. I talk about treatment options and clinical trials multiple times a day, every clinic day.

That doesn't mean you need to travel to a specialty center for every single appointment or lab draw. You can and should partner with doctors close to home. But it's worth getting a second opinion at a sarcoma center. Groups like the Sarcoma Foundation of America even offer travel grants to help patients reach those centers. So even if money is tight or you live in a very rural area, there are resources to help you get the expert care you deserve.

Most patients find that incredibly helpful and reassuring — even if they ultimately continue treatment locally — just knowing they’ve seen someone for whom this isn’t rare.
Transcript has been edited for clarity and conciseness.

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