After Treatment: Living as an Eye Cancer Survivor

Most eye cancers are melanomas (also known as ocular melanomas or intraocular melanomas).

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 you might find it hard not to worry about the cancer coming back (recurring). This is a very common concern in people who have had cancer.

For other people, the eye cancer may never go away completely. In this case, you might get regular treatments to help keep the cancer under control for as long as possible. Learning to live with cancer that doesn’t go away can be very stressful.

Regardless of your situation, you can take steps to live well, both physically and emotionally.

Follow-up care after eye cancer

Whether or not you’ve completed treatment, your doctors will 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.

At first, you’ll likely see your doctor often (every couple of months or so). The frequency will depend on your risk of recurrence, which is based on the size and location of the eye tumor and whether the cancer cells had certain gene mutations.

Over time, your visits will become less frequent, as long as you aren’t having any problems.

Exams and tests

During each follow-up visit, your doctor will ask about any symptoms you’re having. You might also get:

• A physical exam, including a careful eye exam if the eye has not been removed, to look for recurrence or side effects of treatment
• 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 look for cancer recurrence or spread, especially to the liver or lungs

Treatments like surgery, radiation therapy, and laser therapy can cause side effects. Some might last a long time or even show up years later. Your doctor visits are a chance to ask questions, talk about concerns, and get help managing symptoms or side effects. Don’t hesitate to tell your cancer care team about any problems you’re having.

Your doctor will also check your eye for complications. You may need medicines or surgery to manage side effects and keep your vision as clear as possible. For example, radiation therapy can lead to cataracts or can injure muscles around the eye, causing blurred or double vision. Surgery may help with these problems.

If your eye was removed, follow-up is still important. Melanoma can sometimes come back near the eye or in other parts of the body.

Ask your doctor for a survivorship care plan

Talk with your doctor 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 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 health care team
• 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.

Learn more: Health Insurance Options

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 (or have access to) your medical records so you can give your new doctor the details of your diagnosis and treatment.

Learn more: Keeping Copies of Important Medical Records

Can I lower my risk of the eye cancer progressing or coming back?

If you have (or had) eye cancer, you probably want to know if there are things you can do to lower your risk of the cancer 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 this isn’t clear. Still, 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.

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.

What to do if eye cancer comes back

If 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 overall health and preferences.

For more on how recurrent cancer is treated, see Treating 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 eye cancer treatment?

People who have had eye cancer can get a second, different type of cancer later on, but since this is a rare cancer, not many studies have been done in this area. The available information suggests people who have had eye cancer might have an increased risk of certain cancers, including:

• Liver cancer
• Skin melanoma
• Breast cancer
• Prostate cancer

Can I lower my risk of getting a second cancer?

There are steps you can take to lower your risk of cancer in general and stay as healthy as possible. To help maintain good health after eye cancer:

• Stay away from tobacco products. Smoking increases the risk of many cancers.
• Get to and stay at a healthy weight.
• Keep physically active and limit the time you spend sitting or lying down.
• Follow a healthy eating pattern that includes plenty of fruits, vegetables, and whole grains, and limits or avoids red and processed meats, sugary drinks, and highly processed foods.
• Avoid or limit alcohol. If you do drink, have no more than 1 drink per day for women or 2 per day for men.

These steps might also lower your risk of many other health problems.

Learn more: Diet, Physical Activity, and Healthy Living

People who have had eye cancer should also follow the American Cancer Society recommendations for the early detection of cancer, such as those for colorectal, lung, and breast cancer. Most experts don’t recommend any extra testing to look for second cancers unless you have symptoms.

Getting emotional support as an eye cancer survivor

Some amount of feeling depressed, anxious, or worried is normal when eye 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 that’s from friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.