Living As a Hodgkin Lymphoma Survivor

For many people with Hodgkin lymphoma (HL), treatment can cure 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's called a recurrence .) This is a very common concern if you’ve had cancer. 

For some people, HL may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help control it for as long as possible and to help relieve symptoms. Learning to live with HL that doesn't go away can be difficult and very stressful.

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 the HL 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

Follow-up after Hodgkin Lymphoma

Even if you’ve completed treatment, your doctors will still want to watch you closely. It’s very important to go to all your follow-up appointments because HL 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 (see Late and Long-term Side Effects of Hodgkin Lymphoma Treatment). These 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 follow-up visits, the doctor will ask about symptoms, do physical exams, and may do blood tests or imaging tests such as PET or CT scans . Doctor visits are usually recommended every 3 to 6 months for the first several years after treatment. Over time, the length of time between visits can be increased, but even after 5 years you should see your oncologist at least once a year.

People whose HL doesn’t go away with treatment will have a follow-up schedule that's based on their specific situation.

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 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 Hodgkin lymphoma progressing or coming back?

If you have (or have had) Hodgkin lymphoma, you probably want to know if there are things you can do that might lower your risk of the lymphoma 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 HL 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 HL 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 don't 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 Hodgkin lymphoma comes back

If Hodgkin lymphoma does come back (recurs) at some point, your treatment options will depend on where the lymphoma is, what treatments you’ve had before, how long it’s been since treatment, and your current health and preferences. For more on how recurrent HL is treated, see Treating Classic Hodgkin Lymphoma, by Stage.

For more general information, see Understanding Recurrence.

Could I get a second cancer after treatment?

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