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 lymphoma 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 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 depend on several factors, including the original extent of the Hodgkin lymphoma and the type of treatment.
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. Tests like computed tomography (CT) scans and positron-emission tomography (PET)-CT scans should be performed after treatment ends to make sure that the disease is in complete remission. However, research has shown that routine subsequent scans, sometimes called “surveillance imaging,” are not usually necessary, but they should be considered if there are any signs or symptoms of the lymphoma coming back. Talk with your doctor whether tests such as CT scans and PET-CT scans should be repeated, as well as how often you should have physical examinations.
At most cancer centers, follow-up visits are scheduled every 3 to 4 months for the first 1 to 2 years after treatment is completed, 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. After 4 to 5 years, patients should discuss options for long-term surveillance with the health care team. This might include going to a designated survivorship clinics in a cancer center, receiving ongoing care with the treating cancer care team, or a transfer to a long-term plan with a primary care provider.
People 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. Additional immunizations may also be recommended.
Cancer 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 cancer 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. 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.
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, 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. Special attention should be paid to cancer screening and detection, as well as heart risk factors, throughout the person’s lifetime. For people who received radiation therapy to the neck or chest, monitoring thyroid gland function is important.
There is a risk of late effects that affect the heart, so annual blood pressure checks, cholesterol measurements, and management of any risk factors for heart problems may be recommended. Echocardiogram of the heart may be recommended every 5 to 10 years, especially in those who received radiation therapy to the chest as part of their treatment plan.
Follow-up care should also address 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 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. 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 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 them 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.