Living as a Skin Lymphoma Survivor

For some people with skin lymphoma, treatment can remove or destroy the cancer. 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 a recurrence.) This is a very common concern if you've had cancer.

For many people, the lymphoma may never go away completely. These people may get regular treatments such as chemotherapy, radiation, or other therapies to help keep the lymphoma under control for as long as possible and to help relieve symptoms from it. Learning to live with lymphoma that doesn't go away can be difficult and very stressful. It has its own type of uncertainty. See Managing Cancer as a Chronic Illness for more about this.

Follow-up care

Whether you have completed treatment or are still being treated, your doctors will still want to watch you closely with regular physical exams, blood tests, and possibly imaging tests. It's very important to go to all of your follow-up appointments. 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 about symptoms, examine you, and may order some tests. For example, you may need to have frequent blood tests to monitor your bone marrow function, to check that you have recovered from treatment, and to look for possible signs of disease recurrence.

The choice of other tests depends on the type, location, and extent of your lymphoma. If lymph nodes or other organs are affected, CT scans may be used to measure the size of any remaining tumors. PET scans may be done if your doctors aren’t sure if an abnormal area on a CT scan is an active lymphoma or scar tissue.

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 lymphoma 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) a skin lymphoma, you probably want to know if there are things you can do that might lower your risk of it 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 skin 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, further treatment will depend on the type of lymphoma, where it recurs, what treatments you’ve had before, and your health and preferences. For more information, see Treatment for Specific Types of Skin Lymphoma. For more general information on dealing with a recurrence, see Coping with Cancer Recurrence.

Can I still get another type of cancer?

Unfortunately, being treated for skin lymphoma doesn’t mean you can’t get another cancer. People who have had lymphoma of the skin can still get the same types of cancers that other people get. In fact, they might even be at higher risk for certain types of cancer, such as other lymphomas.

Because of this, it’s important to do what you can to lower your cancer risk, such as not smoking, staying at a healthy weight, staying active, and eating a healthy diet. And be sure to talk to your doctor about which cancer screening tests are right for you.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when cancer 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. To learn more about this, see Coping With Cancer.