Lymphoma - Non-Hodgkin: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 08/2019

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

Care for people diagnosed with cancer does not end when active treatment has finished. Your health care team will continue to check that the cancer 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. For people treated for an aggressive lymphoma, visits are most frequent in the first 3 years following the end of treatment. For many aggressive lymphomas, there are very few recurrences after 5 years, and some oncologists stop routine follow-up visits at this time. However, these people should continue routine follow-up with their primary care physician to watch for late effects of treatment.

For slow-growing, or indolent, lymphomas, follow-up visits may continue throughout the person’s lifetime. Most doctors will see a person treated for an indolent lymphoma between 2 and 4 times per year for a physical examination and blood tests. During this time, doctors may also monitor the disease with CT scans or PET scans if there are any abnormal test or exam results or if symptoms are getting worse.

Although CT scans and PET scans are very important tools for determining the disease’s response to treatment and monitoring for recurrence, there is debate over when and how often scans should be used. As discussed in Diagnosis, both of these imaging tests expose the person to a small amount of radiation. An integrated (combined) PET-CT scan causes more radiation exposure than either alone.

Most doctors agree that performing routine scans, particularly when the person has no symptoms, may be exposing patients to unnecessary radiation. However, there are few recommendations on how often these scans should be performed. Talk with your doctor about the risks and benefits of these tests and whether another type of test that involves less exposure to radiation can be used.

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. Cancer recurs because small areas of cancer 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 cancer originally diagnosed and the types of treatment given.

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 (see Late Effects of Treatment).

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. 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 cancer 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. As mentioned above, 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 cancer, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about your cancer 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 cancer diagnosis. Use the menu to choose a different section to read in this guide.