Gastrointestinal Stromal Tumor - GIST: Questions to Ask the Doctor

Approved by the Cancer.Net Editorial Board, 12/2015

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

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer 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, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

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 GIST specialist?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are open to me? Where are they located, and how do I find out more about them?

  • 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 coordinate 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 related to my medical care, who can help me with these concerns?

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

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

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?

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

Questions about targeted therapy/kinase inhibitors

  • 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 imatinib is likely to be?

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

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

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

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

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 are the possible long-term side effects of having this treatment?

  • What can be done to relieve the side effects?

  • 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 risk of the tumor returning? Are there signs and symptoms I should watch for?

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

  • What follow-up tests will I need, and how often will I need them?

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

  • Who will coordinate my follow-up care?

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

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.