Living as a Merkel Cell Carcinoma (MCC) Survivor

For many people with Merkel cell carcinoma (MCC), treatment can remove or destroy the cancer. The end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but it's hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For others, MCC may never go away completely. Some people may get regular treatment with radiation therapy, chemotherapy, immunotherapy, or other treatments to try to help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful.

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

Follow-up care

Whether or not you have completed treatment, your doctors will want to watch you closely. It’s very important to go to all follow-up appointments. During these visits, your doctors will ask if you are having any problems. They may also examine you and order lab tests or imaging tests to look for signs of cancer or treatment side effects.

Some treatment side effects might last a long time or might not even show up until years after you have finished treatment. 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

Your cancer care team will explain what tests you need and how often you need them.

A typical follow-up schedule for Merkel cell cancer might include physical exams, with complete skin and lymph node exams, every 3 to 6 months for the first few years after treatment, and then every 6 to 12 months after that. Some doctors might also recommend imaging tests such as PET/CT scans, especially for people who are at higher risk of the cancer returning (such as those who had a large tumor or more advanced disease).

It’s also important for you to examine your skin and lymph nodes. Most doctors recommend doing this at least monthly. You should see your doctor if you find any new lump or change in your skin. You should also report any new symptoms (such as pain, cough, fatigue, or loss of appetite) that don't go away. If MCC comes back, it's usually within the first couple of years after treatment, but it can sometimes come back many years later.

People with MCC that doesn't go away completely with treatment will have a follow-up schedule based on their situation.

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
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health

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 cancer 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 (or have access to them) so you can 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 Merkel cell carcinoma (MCC) progressing or coming back?

If you have (or have had) Merkel cell cancer, you probably want to know if there are things you can do that might lower your risk of the cancer coming back, or of getting a new skin cancer.

At this time, not enough is known about MCC to say for sure if there are things you can do that will be helpful.

We do know that having a suppressed or weakened immune system can raise the risk of dying from MCC, but this is often something people can’t do much about. For example, some people need to take immune-suppressing medicines because they’ve had an organ transplant or because they have an autoimmune disease. But for others, there may be things you can do to help keep your immune system strong. For example, it’s very important for people infected with HIV to take their medicines to help keep the infection under control.

We also know that people who have had MCC have a higher risk for other types of skin cancer. Because of this, it’s important to limit your exposure to UV rays (from the sun or tanning beds) and to examine your skin every month for signs of MCC coming back or possible new skin cancers. Skin cancers that are found early are often much easier to treat than those found at a later stage.

Adopting other healthy behaviors such as not smoking, eating well, being active, and staying at a healthy weight might help as well, but no one knows for sure. Still, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of MCC 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 MCC progressing or coming back. This doesn’t mean that no supplements are helpful, but it’s important to know that so far, none have been proven to be.

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 the cancer comes back

If Merkel cell carcinoma does come back at some point, your treatment options will depend on where the cancer is, what treatments you’ve had before, and your overall health and preferences.

For more information on how recurrent cancer is treated, see Treating Merkel Cell Carcinoma Based on the Extent of the Disease.

For more general information on dealing with a recurrence, see Understanding Recurrence.

Getting emotional support

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 in Life After Cancer.