How to Access Support Resources for Rare Cancers

Being diagnosed with a rare tumor like gastrointestinal stromal tumor (GIST) can be overwhelming, according to Dr. Rosario Ligresti, chief of Gastroenterology and Interventional Endoscopy at Hackensack Meridian Health, who emphasized the importance of support networks and expert guidance when navigating such a diagnosis.

To discuss the topic further, Ligresti sat down for an interview with CURE, in which he highlighted resources for patients with GIST, including support groups, treatment guidance and the critical role of specialized care centers.

Notably, he also discussed what patients with GIST should know upon starting treatment in a previous interviewwith CURE.

Transcript

What guidance can you offer patients newly diagnosed with GIST on accessing support resources, seeking second opinions and staying well-informed about their care?

The good thing is that there are some very good support groups for this. It's not common to find support groups for every rare tumor, but GIST and other rare tumors certainly have support groups available.

One of these support groups is called GIST Together, a grassroots group of very important advocates for patients with this disease. I'm amazed at how much information they can offer patients, as well as general support. Their website is full of information about side effect management, available treatment options and even links to cutting-edge trials for this disease.

There are certainly support resources available. Obviously, this all stems back to having a very good rapport with your oncologist and gastroenterologist so they can guide you through everything. The therapy is generally very prolonged, so you want to have a very good relationship with your treatment team and a good cancer center.

Again, keep in mind that these are very uncommon tumors that are best treated by people who see a lot of them. These are not your average oncology tumors. Having said that, expertise matters, and for these particular tumors, which are so uncommon, you want to go to the people who see a lot of them.

Reference

1. “Breaking Down the Treatment of GIST for Patients,” by Ryan Scott. CURE, August 21, 2025; https://www.curetoday.com/view/expert-oncologist-breaks-down-the-current-treatment-landscape-of-gist

Transcript has been edited for clarity and conciseness.

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