Living as an Eye Cancer Survivor

For many people with eye cancer, 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 cancer the growing or coming back. (When cancer comes back after treatment, it is called a recurrence.) This is a very common concern in people who have had cancer.

For other people, the eye cancer may never go away completely. These people might get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the cancer in check for as long as possible. Learning to live with cancer as a more of a chronic disease can be difficult and very stressful.

Follow-up care

If you have completed treatment, your doctors will still want to watch you closely. It’s very important to go to all your follow-up appointments, because eye cancer can sometimes come back even many years after treatment. Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments.

Some treatment side effects might last a long time or might even show up years after you have finished treatment. Your doctor visits are a good time to ask questions concerns you might have. Don’t hesitate to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.

Exams and tests

During your follow-up visits, your doctor will ask about any symptoms you are having, examine you, and may order blood or imaging tests.

Your doctor will most likely want to see you fairly often (every couple of months or so) at first. The time between visits may get longer if you are not having any problems. During these doctor visits, you might get:

• Physical exams (including careful eye exams if the eye has not been removed) to look for tumor recurrence or side effects of treatment as early as possible
• Blood tests to look for possible signs of cancer spread to the liver
• Imaging tests such as chest x-rays, ultrasound, CT scans, or MRI scans to watch for cancer recurrence or spread, especially to the liver or lungs

Treatments for eye cancers such as surgery, radiation therapy, and laser therapy can cause side effects. Your doctors will check your treated eye for complications and may recommend medicines or operations to help control side effects and help to keep your vision as clear as possible. For example, radiation therapy might cause cataracts to form or injure muscles around the eye, resulting in blurred or double vision. In either case, surgery may help with these problems.

Follow-up exams and tests are also important for people who have had an eye removed, because melanomas can still sometimes recur in the area around the eye or in distant parts of the body.

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 eye cancer progressing or coming back?

If you have (or have had) eye cancer, you probably want to know if there are things you can do that might lower your risk of the eye cancer 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 eye cancer 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 eye cancer 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 eye cancer comes back

If the eye cancer does come back at some point, your treatment options will depend on the type of eye cancer, where it is, what treatments you’ve had before, how long it’s been since treatment, and your current health and preferences. For more information on how recurrent cancer is treated, see Treating Uveal (Eye) Melanoma by Location and Size. 

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 eye cancer can still get other cancers. In fact, eye cancer survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Eye Cancer.

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.