Neuroendocrine Tumor of the Pancreas: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 06/2019

ON THIS PAGE: You will read about your medical care after treatment for a pancreas NET is completed and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with a pancreas NET does not end when active treatment has finished. Your health care team will continue to check that the tumor has not come back, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. This is important because a pancreas NET can recur even several years after treatment.

Patients and families should be aware that a pancreas NET usually grows slowly and may be similar to a chronic illness. This means that the patient will receive treatment and follow-up care in cycles on an ongoing basis. Learn more about living with chronic cancer and the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the tumor has come back. A tumor recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of tumor originally diagnosed and the types of treatment given. During this time, it is also important to tell your doctor about any new symptoms as soon as you notice them, such as fatigue, breathing problems, or pain in any part of the body.

There are no established guidelines for a specific schedule of follow-up care after treatment for a pancreas NET. In general, people who have had surgery should see their doctor 3 months after their operation for a physical examination, blood tests, and CT scan. After that, follow-up care should include a physical examination and blood tests about every 6 to 12 months, with additional imaging tests, such as x-rays, done as needed.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. For example, some people experience late effects after being treated with octreotide, such as thyroid or gallbladder problems. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help keep track of the treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to talk with your doctor about who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of tumor, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your medical care will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis. Use the menu to choose a different section to read in this guide.