Living as a Skin Lymphoma Survivor

For some people with skin lymphoma, treatment removes or destroys 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 (called a recurrence). This is a very common concern.

But for many people, the lymphoma may never go away completely.

In this case, you may get regular treatments such as chemotherapy, radiation, or other therapies to help keep the lymphoma under control and to help relieve symptoms. Learning to live with lymphoma that doesn't go away can be difficult and stressful.

No matter your situation, there are steps you can take to live well, both physically and emotionally.

Follow-up care for skin lymphoma

Whether you’ve completed treatment or are still being treated, your cancer care team will watch you closely with regular physical exams, blood tests, and possibly imaging tests.

It's very important to go to all your follow-up appointments. These visits are a good time to ask questions, talk about changes or problems, or discuss any concerns you have.

Exams and tests

During follow-up visits, your cancer care team will examine you and ask about symptoms. They may also order tests. For example, you might need frequent blood tests to monitor your bone marrow function, check that you’ve recovered from treatment, and look for possible signs of disease recurrence.

You might also have other tests, depending on the type, location, and extent of your lymphoma.

If lymph nodes or other organs are affected, you might get CT scans to measure the size of any remaining tumors. If a CT scan shows an abnormal area and your cancer care team isn’t sure if this is an active lymphoma or scar tissue, they may order a PET scan.

Asking for a survivorship care plan

Talk with your cancer care team about creating a survivorship care plan for you. This plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests, such as early detection (screening) 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 to contact your cancer care team
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Keeping health insurance and copies of your medical records

During and 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. Learn more in Managing Your Health Insurance.

At some point, 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 (or have access to them) so you can give your new doctor the details of your diagnosis and treatment.

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.

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.

Learn more in Cancer Risk and Prevention.

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.

In the United States, dietary supplements are not regulated like medicines. 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 the lymphoma comes back

If your lymphoma comes 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. To learn more, 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’ve had lymphoma of the skin can still get the same types of cancers other people get. In fact, you might 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 health care team 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, whether that’s from friends and family, religious groups, support groups, professional counselors, or others.

Learn more: Coping with Cancer.