Living as a Non-Hodgkin Lymphoma Survivor

For many people with non-Hodgkin lymphoma, treatment can destroy the lymphoma. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the lymphoma coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common worry if you’ve had cancer.

For some people, the lymphoma may never go away completely. These people may get regular treatments with chemo, radiation, or other therapies to help keep the lymphoma in check for as long as possible and to help relieve symptoms. Learning to live with lymphoma that doesn’t go away can be difficult and very stressful.

Follow-up care

There are many types of non-Hodgkin lymphomas, which can require different treatments and can have very different outlooks. Your care after treatment will depend on the type of lymphoma you have, what type of treatment you receive, and how well treatment works.

Even if you’ve completed treatment, your doctors will still want to watch you closely. It’s very important to go to all of your follow-up appointments, because lymphoma can sometimes come back even many years after treatment.

Some treatment side effects might last a long time or might not even show up until years after you have finished treatment. Your doctor visits are a good time to ask questions and talk about any changes or problems you notice or concerns you have.

Exams and tests

During your follow-up visits, your doctor will ask you about any symptoms you are having, examine you, and may order blood or imaging tests. Your doctor will probably want to see you regularly, usually every few months for the first year or so and gradually less often after that.

Imaging tests may be done, based on the type, location, and stage of lymphoma. For example, CT scans or PET/CT scans may be used to monitor the size of any remaining tumors, or to look for possible new tumors.

You may need frequent blood tests to check that you have recovered from treatment and to look for possible signs of problems such as lymphoma recurrence. Blood counts can also sometimes become abnormal because of a disease of the bone marrow called myelodysplasia, which can sometimes lead to leukemia. Some chemotherapy drugs can cause this disease. For more on this, see Myelodysplastic Syndromes. It’s also possible for a person to develop leukemia a few years after being treated for lymphoma.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan for you. This plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of the lymphoma progressing or coming back?

If you have (or have had) lymphoma, you probably want to know if there are things you can do that might lower your risk of the lymphoma growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of lymphoma or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of lymphoma progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the lymphoma comes back

If the lymphoma does come back at some point, your treatment options will depend on the type of lymphoma, where it is, what treatments you’ve had before, how long it’s been since treatment, and your current health and preferences.

For more general information on dealing with a recurrence, see Coping With Cancer Recurrence.

Could I get a second cancer after treatment?

People who’ve had non-Hodgkin lymphoma can still get other cancers. In fact, lymphoma survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Non-Hodgkin Lymphoma.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when lymphoma is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.