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UNDERSTANDING GIST

For Newly-Diagnosed Patients: Understanding Your Diagnosis

Being diagnosed with GIST can be an incredibly overwhelming and confusing experience, but gaining a clear understanding of your disease is the first step towards managing it. 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: Receiving care from a GIST specialist can have an impact on your quality of care and prognosis. You can visit LifeRaftGroup.org to find a GIST specialist near you.
  • Molecular Testing: Ask if molecular testing has been done to identify mutations in the KIT or PDGFRA genes. This testing can provide essential information that helps tailor your treatment and helps understand your GIST diagnosis.
  • Sign up with an Advocacy Group: Advocacy Organizations such as The Life Raft Group, SPAGN, GIST Support International and others can help connect you to the right providers and information.
  • Understand Your Risk: Connect with your specialist to help assess the best options to treat your GIST based on certain factors, like mitotic rate, which can affect your treatment plan.
GIST personal doctor discussion guide

Prepare for your next appointment with confidence.

Use our interactive Doctor Discussion Guide to create a personalized list of questions and topics tailored to your GIST treatment journey.

Getting Started with Treatment:

The treatment for GIST typically begins with either surgical intervention or targeted therapy, depending on factors such as the size and location of the tumor, and something called the mitotic rate (which can help understand your risk of recurrence). Targeted therapies, particularly tyrosine kinase inhibitors (TKIs), are often used because they specifically target the proteins that allow cancer cells to grow.

Treatment options

Surgery: For localized tumors, surgery may be the first line of treatment to remove the tumor completely. Make sure you discuss with your doctor a plan for continued follow-up and surveillance following surgery.

Tyrosine Kinase Inhibitors (TKIs): Medications like imatinib are commonly prescribed as the first line of defense against GIST, especially in cases where surgery is not possible or the tumor has spread.

Clinical Trials:Explore the possibility of participating in clinical trials that are evaluating investigational products for GIST that are not yet approved by regulatory agencies.

Receiving a cancer diagnosis can be emotionally challenging, and having the right support system is crucial. Whether through online communities, support groups, or one-on-one counseling, connecting with others who understand your experience can provide comfort and practical advice.

Support Resources:

  • Advocacy Organizations: Join groups like the Life Raft Group or GIST Support International, which focus on supporting GIST patients and their families.
  • Counseling Services: Consider speaking with a mental health professional who specializes in cancer care to help manage the emotional impact of your diagnosis.
  • Educational Resources: Stay informed by accessing reputable sources of information about GIST, treatment options, and the latest research.