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 you might find it hard not to worry about the lymphoma coming back. (If cancer comes back after treatment, it is called recurrence.) If you’ve had cancer, it is very common to worry about this.

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 and to help relieve symptoms for as long as possible. 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 lymphoma, 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, how well treatment works, and other factors.

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 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, then 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 new tumors that may develop.

You may need frequent blood tests to check that you have recovered from treatment and to look for signs of problems, such as lymphoma recurrence. Blood counts can 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 schedule for follow-up exams and 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 can 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 cancer 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, including:

• Melanoma skin cancer
• Lung cancer
• Kidney cancer
• Kaposi sarcoma
• Cancers of the head/neck area (includes the lip, tongue, floor of the mouth, throat, salivary glands, and voice box)
• Colorectal cancer
• Thyroid cancer
• Bone and soft tissue cancer
• Bladder cancer
• Leukemia and myelodysplastic syndrome
• Hodgkin disease

Radiation therapy to the chest increases the risk of breast cancer in women who were treated before age 30. The risk of mesothelioma, a rare cancer of the outer lining of the lung, is also increased in those who were treated with chest radiation.

Because women who were treated with chest radiation have an increased risk of breast cancer, the American Cancer Society recommends yearly breast MRIs in addition to mammograms and clinical breast exams beginning at age 30 for these women.

Other than this, most experts don’t recommend any additional testing to look for second cancers in people who’ve had non-Hodgkin lymphoma. Still, it’s important to let your doctor know about any new symptoms or problems you have, because they could be caused by the lymphoma coming back, or by a new disease or second cancer.

Like other people, lymphoma survivors should follow the American Cancer Society guidelines for the early detection of cancer and stay away from tobacco products, which increase the risk of many types of cancers.

To help maintain good health, people who’ve had lymphoma should also:

• Get to and stay at a healthy weight.
• Stay physically active, and limit time spent sitting or lying down.
• Follow a healthy eating pattern that includes plenty of fruits, vegetables, and whole grains, and that limits or avoids red and processed meats, sugary drinks, and highly processed foods.
• Avoid or limit alcohol. If you do drink, men should have no more than 2 drinks per day and women should have no more than 1 drink per day.

These steps may also lower the risk of some other health problems.

See Second Cancers for more information about causes of second cancers.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when you’ve experienced lymphoma in 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.