Understanding GIST
Newly diagnosed with GIST? Start here.
A GIST diagnosis can feel overwhelming and confusing — but gaining a clear understanding of your disease is the first step toward managing it. Here’s what to know, and the questions worth asking first.
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Suzy, Living with GIST
Understanding your diagnosis
GIST, or gastrointestinal stromal tumor, is a rare type of cancer that arises from the connective tissue in the digestive tract — most commonly in the stomach or small intestine. Your diagnosis will likely involve determining the specific type of GIST you have, which is crucial for guiding your treatment plan.
Key considerations at diagnosis
- See a GIST specialist. Care from a GIST specialist can have a real impact on your quality of care and prognosis. The Life Raft Group directory can help you find one near you.
- Ask about molecular testing. Testing for mutations in the KIT or PDGFRA genes provides essential information that helps tailor your treatment.
- Sign up with an advocacy group. Organizations like The Life Raft Group, SPAGN, and GIST Support International can connect you to the right providers and information.
- Understand your risk. Work with your specialist to assess the best options based on factors like mitotic rate, which can affect your treatment plan.
Doctor Discussion Guide
Prepare for your next appointment with confidence
Use our interactive guide to create a personalized list of questions and topics tailored to your GIST journey.
Getting started with treatment
Treatment for GIST typically begins with either surgery or targeted therapy, depending on factors such as the size and location of the tumor and the mitotic rate (which helps gauge the risk of recurrence). Targeted therapies — particularly tyrosine kinase inhibitors (TKIs) — specifically target the proteins that allow cancer cells to grow.
Surgery
For localized tumors, surgery may be the first line of treatment to remove the tumor completely. Discuss a plan for follow-up and surveillance afterward.
Tyrosine kinase inhibitors (TKIs)
Medications like imatinib are commonly prescribed as the first line of defense, especially where surgery isn't possible or the tumor has spread.
Clinical trials
Explore clinical trials evaluating investigational products for GIST that are not yet approved by regulatory agencies.
Support resources
Receiving a cancer diagnosis is emotionally challenging, and the right support system matters. Connecting with others who understand your experience can provide comfort and practical advice.
- Advocacy organizations. Join groups like the Life Raft Group or GIST Support International, which focus on supporting patients and families.
- Counseling services. Consider speaking with a mental health professional who specializes in cancer care.
- Educational resources. Stay informed with reputable sources on GIST, treatment options, and the latest research.
- Connect with an educator. Talk one-on-one with a patient and community educator who can provide additional information.
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