Questions to Ask About Pancreatic Neuroendocrine Tumor

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

When you’re told you have a pancreatic neuroendocrine tumor (pNET)

• What kind of pancreatic neuroendocrine tumor do I have?
• Has my cancer spread beyond where it started?
• What is the stage of my cancer, and what does that mean?
• What is the grade of the tumor, and what does that mean?
• Is my cancer resectable (removable by surgery)?
• Are my symptoms because the cancer is making too many hormones?
• Will I need any other tests before we can decide on treatment?
• Will I need to see other doctors or health care 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 for pNET

• How much experience do you have treating this type of cancer?
• What are my treatment options?
• What do you recommend and why?
• What is the goal of the treatment?
• Should I get a second opinion? How do I do that? Can you recommend a doctor or cancer center?
• How is treatment likely to help me?
• What risks or side effects might I expect? Are there things I can do to reduce these side effects?
• Should I think about taking part in a clinical trial?
• How quickly do I 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 are the chances the cancer will recur (come back) with these treatment plans?
• Will treatment affect my daily activities? Can I still work full time?
• What will my options be if the treatment doesn’t work or if the cancer comes back?
• What if I have transportation problems getting to and from treatment?

During treatment for pNET

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 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?

After treatment for pNET

• Are there any limits on what I can do?
• Do I need a special diet after treatment?
• What 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 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?

Remembering what the doctor said

It’s hard to remember all of the things you’re told at each doctor’s visit, especially when you’re anxious or afraid.

Even if the doctor carefully explains things, you might not hear or remember all that’s said or shown to you. Here are some ways to help you remember everything your doctor tells you.

• Take notes on what your doctor says.
• Ask if you can record your talks.
• Take a family member or friend with you. Ask them to remind you of questions you want to ask and ask them to take notes, so you can focus on listening and talking directly with the doctor. ​

Along with these examples, be sure to write down some of your own. 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?