Gastrointestinal Stromal Tumor - GIST: Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find some questions to ask your doctor or other members of the health care team to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • Where is the tumor located?

  • Can you explain my pathology report (laboratory test results) to me?

  • Should my tumor be tested for genetic changes?

  • How aggressive is the tumor?

  • Can you recommend a gastrointestinal stromal tumor (GIST) specialist?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What types of research are being done for GIST in clinical trials? Do clinical trials offer additional treatment options for me?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the tumor, help me feel better, or both?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • Do I need to start treatment right away?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, or perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs of medical care, who can help me?

  • What support services are available to me? To my family?

  • If I have questions or problems, who should I call?

Questions to ask about having surgery

  • What type of surgery will I have? Will anything besides the tumor be removed?

  • What is the goal of surgery? Will it remove the entire tumor?

  • How long will the operation take?

  • How long will I be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term side effects of having this surgery?

Questions about having targeted therapy/tyrosine kinase inhibitors (TKIs)

  • If I have surgery, should I take imatinib before surgery? What dosage? For how long? How much and how long after surgery?

  • What factors determine how effective the TKI is likely to be?

  • What are the possible side effects? How will they be treated?

  • Who should I contact about any side effects I experience? And how soon?

  • What can be done if imatinib stops working? Can I receive sunitinib if that happens?

  • What can be done if sunitinib stops working? Can I receive regorafenib if that happens?

  • Are there other targeted therapies that may work?

  • Can I take the generic form of the prescribed drug?

  • What can be done to prevent or relieve the side effects?

Questions to ask about having radiation therapy

  • What is the goal of this treatment?

  • How often will I receive radiation therapy?

  • What side effects can I expect during treatment?

  • What can be done to prevent or relieve the side effects?

  • Who should I contact about any side effects I experience? And how soon?

  • What will I experience when I receive radiation therapy? Will it hurt or cause me discomfort?

  • What can I do to get ready for this treatment? Are there recommendations on what clothes to wear or leave behind?

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment I received?

  • What can be done to prevent or relieve these side effects?

  • What follow-up tests will I need, and how often will those tests be needed?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • When should I return to my primary care doctor for regular medical care?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.