Questions to Ask About Gastrointestinal Stromal Tumors

It’s important to have honest, open discussions with your cancer care team. You should feel free to ask any question, no matter how small it might seem. Some questions to consider:

When you’re told you have a gastrointestinal stromal tumor (GIST)

• How sure are you that my tumor is a GIST?
• Where is my tumor located? How big is it?
• How likely is this tumor to grow or spread quickly?
• Has my tumor spread beyond where it started?
• What is my cancer's stage, and what does that mean?
• Will I need any other tests before we can decide on treatment?
• Will I need to see any other doctors?
• If I'm concerned about costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

• How much experience do you have treating these tumors?
• What are my treatment options?
• What do you recommend? Why?
• What’s the goal of the treatment?
• Should I get a second opinion? If so, how do I do that? Can you recommend a doctor or cancer center?
• What are the chances my cancer can be cured?
• How quickly do we need to decide on treatment?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What risks or side effects I should expect? How long are they likely to last?
• Will treatment affect my daily activities?
• How likely is it that the cancer will come back after treatment? Is there anything I can do to lower this risk?

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you or someone on your team on nights, holidays, or weekends?
• Do I need to change what I eat or my level of physical activity?
• Are there any limits on what I can do? 
• Do you know of any local or online support groups where I can talk to others who have been through this?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?

After treatment

• Are there any limits on what I can do?
• What symptoms should I watch for?
• Should I be exercising or following a special diet?
• What are the chances of my cancer coming back? Is there anything I can do to help lower my risk?
• What type of follow-up will I need after treatment?
• How will we know if the cancer has come back? What should I watch for?
• What will my options be if the cancer comes back?

Along with these sample questions, be sure to write down some of your own. For instance, you might want more information about clinical trials for which you may qualify.

Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. To find more about speaking with your health care team, see The Doctor-Patient Relationship.