Questions to Ask About Gastrointestinal Neuroendocrine Tumors

It is important to have honest, open discussions with your cancer care team. They want to answer all of your questions, so that you can make informed treatment and life decisions. For instance, consider these questions:

Questions to ask after getting a diagnosis

• Where in my gastrointestinal (GI) tract is the neuroendocrine tumor (NET) located?
• Can you explain my pathology report (laboratory test results) to me?
• What is the stage of the tumor? What does this mean?
• What is the grade? What does this mean?
• How much experience do you have treating this type of tumor?
• Do I have a functional NET or carcinoid syndrome? What does this mean?
• Is my heart affected by the tumor? How will you monitor my heart’s health and performance?
• Where is the cancer located?
• Has the cancer spread beyond where it started?
• What is the cancer’s stage (extent), and what does that mean?
• Will I need other tests before we can decide on treatment?
• Will I need to see any other doctors or health professionals?
• If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

• What are my treatment options?
• What do you recommend and why?
• How much experience do you have treating this type of cancer?
• Should I get a second opinion? How do I do that? Can you recommend someone?
• What would the goal of the treatment be?
• 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 are there to the treatments you suggest? Are there things I can do to reduce these side effects?
• How might treatment affect my daily activities? Can I still work full time?
• What are the chances the cancer will recur (come back) with these treatment plans?
• What will we do if the treatment doesn’t work or if the cancer recurs?
• What if I have transportation problems getting to and from treatment?

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 asking 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 on nights, holidays, or weekends?
• Do I need to change what I eat during treatment?
• Are there any limits on what I can do?
• Can I exercise during treatment? If so, what kind should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• What if I need social support during treatment because my family lives far away?

After treatment

• Do I need a special diet after treatment?
• Are there any limits on what I can do?
• What other symptoms should I watch for?
• What kind of exercise should I do now?
• What type of follow-up will I need after treatment?
• How often will I need to have follow-up exams and imaging tests?
• Will I need any blood tests?
• 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, you might write down some of your own. For instance, you might want more information about recovery times. Or you might want to ask if you qualify for any clinical trials.

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. Learn more in Who Is the Cancer Care Team?