Lymphoma - Hodgkin: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 09/2016

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

Care for people diagnosed with lymphoma doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, manage any side effects and late effects of treatment, 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. How often a person needs follow-up care and which tests are performed depends on several factors, including the original extent of the Hodgkin lymphoma and the type of treatment. Tests like CT scans and PET scans should be repeated after treatment ends to make sure that the disease is in complete remission, but research has not shown that having routine subsequent (“surveillance”) scans is better than scanning only when there is development of new symptoms or new findings on your physical examination or laboratory tests. Talk with your doctor whether tests such as CT scans and PET scans should be repeated, as well as how often you should have physical examinations.

Patients who have had Hodgkin lymphoma should get a flu shot every year. It may be recommended that some survivors get an immunization against pneumonia, which may be done every 5 to 7 years.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. 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 also ask specific questions about your health.

In general, each follow-up visit includes a discussion with the doctor, a physical examination, and blood tests. During some visits, scans may be done. At most cancer centers, follow-up visits are scheduled every 2 to 3 months for the period right after treatment, which is when the risk of recurrence is highest. After that, the time between visits increases over time. Later visits may only be 2 to 3 times per year until 5 years have passed. Then, annual visits should be continued with an oncologist.

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. In addition, 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. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them. Special attention should be paid to cancer screening and detection, as well as heart risk factors, throughout the person’s lifetime. For patients who received radiation therapy to the neck or chest, monitoring thyroid gland function is important.

Follow-up care should also address the person’s quality of life, including emotional concerns. In particular, Hodgkin lymphoma survivors are encouraged to be aware of the symptoms of depression and to talk with their doctor immediately if they have such symptoms.

Keeping personal health records

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

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general 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, as well as 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. Or, use the menu to choose another section to continue reading this guide.