Living as a Pancreatic Neuroendocrine Tumor Survivor

For some people with a pancreatic neuroendocrine tumor (NET), treatment can remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For other people, the cancer might never go away completely, or it might come back in another part of the body. These people may stay on drug therapy or get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the cancer under control for as long as possible. Learning to live with cancer that does not go away can be difficult and very stressful.

Follow-up care

When treatment ends, your doctors will still want to watch you closely. It is very important to go to all your follow-up appointments. During these visits, your doctors will ask if you are having any problems, examine you, and order lab tests or x-rays and scans if needed to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others might last a long time. Some side effects might not even show up until years after you have finished treatment. It’s important for all pancreatic NET survivors, to let their health care team know about any new symptoms or problems, because they could be caused by the cancer coming back or by a new disease or second cancer.

Doctor visits and follow-up tests

Your schedule of doctor visits, exams, and tests will depend on the original extent of your cancer, the specific type of pancreatic NET you had, how it was treated, and other factors.

Doctors often advise most people who have had their pancreatic NET completely removed to return in 6-12 months for a complete physical exam and certain imaging tests to look for any signs of recurrence. Blood and or urine tests may be helpful for some patients. One year after surgery, further visits with labs and imaging may be recommended every 6-12 months to continue for 10 years.

Follow-up visits and imaging tests may be slightly more frequent if your cancer could not be completely removed with surgery, or if the cancer has spread to other organs like the liver or is growing very quickly.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include:

• A suggested schedule for follow-up exams and tests
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• A schedule for other tests you might need, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• Diet and physical activity suggestions that might improve your health, including possibly lowering your chances of the cancer coming back
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower the risk of my cancer progressing or coming back?

If you have (or have had) pancreatic NET, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight is important. We know that these types of changes can have positive effects on your health that can extend beyond your risk of cancer.

Quitting smoking

Smoking has been linked to pancreas NET, so not smoking may help reduce your risk. We don’t know for certain if this will help, but we do know that quitting smoking can have other health benefits such as improved healing, lowering your risk of some other cancers, as well as improving your outcome (prognosis) from the cancer. If you want to quit smoking and need help, call the American Cancer Society at 1-800-227-2345.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of pancreatic NET progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If your cancer does come back at some point, your treatment options will depend on the where the cancer is, what treatments you’ve had before, and your current health and preferences. Treatment options might include surgery, radiation therapy, chemotherapy, targeted therapy or some combination of these. For more on how recurrent cancer is treated, see Treatment of Pancreatic Neuroendocrine Tumor, Based on Extent of the Tumor.

For more general information on recurrence, see Understanding Recurrence.

Second cancers after treatment

People who’ve had a pancreatic NET might still get other cancers. Learn more in Second Cancers After Pancreatic Neuroendocrine Tumor.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when pancreatic NET is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.