Pheochromocytoma and Paraganglioma: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 11/2022

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

Care for people diagnosed with a pheochromocytoma or paraganglioma 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.

People treated for a pheochromocytoma or paraganglioma need lifelong follow-up care. This is important because pheochromocytomas and paragangliomas can recur years after initial treatment. This care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead.

Generally, people treated for a catecholamine-producing pheochromocytoma or paraganglioma should have their blood and urine tested for increased levels of adrenaline and noradrenaline annually. For people with a tumor that does not produce catecholamines, imaging tests such as a computed tomography (CT) scan, magnetic resonance imaging (MRI), DOTA scan, or metaiodobenzylguanidine (MIBG) scan, should be done annually for at least 10 years. If a tumor is linked to a hereditary syndrome, scans should be done for the rest of the patient's life, blood and urine tests should be done regularly, and there may be screening tests for other tumors linked to the inherited syndrome.

If both adrenal glands have been removed during surgery for pheochromocytoma, long-term medication will be needed to replace the hormones that are normally produced by these glands. You should also wear a medical alert bracelet. If you ever become sick or fall unconscious, the bracelet can inform health care professionals of your condition.

Rehabilitation may be recommended, and this could mean any of a wide range of services, such as physical therapy, occupational therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent as possible. Learn more about rehabilitation.

Learn more about 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 cancer 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. People may have tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type, location, and stage of tumor first diagnosed and the types of treatment given. During this time, it is also important to tell your doctor about any new signs or symptoms as soon as you notice them.

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

Managing long-term and late side effects

Most people expect to have 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 after treatment has ended. 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 your diagnosis, location of the tumor, your individual treatment plan, and your overall health. 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. The American Society of Clinical Oncology (ASCO) offers forms to help track of the treatment you received and develop a survivorship care plan after 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 primary care doctor or another health care professional. This decision depends on several factors, including the type and stage of neuroendocrine tumor (NET), treatments received, 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 them 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 of a tumor. Use the menu to choose a different section to read in this guide.