What happens after treatment for Merkel cell carcinoma?
For many people with Merkel cell carcinoma (MCC), 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 growing or coming back. (When cancer comes back after treatment, it is called recurrent cancer or a recurrence.) This is a very common concern in people who have had cancer.
It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed information on this.
For others, MCC may never go away completely. These people may get regular treatment with radiation therapy, chemotherapy, 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. It has its own type of uncertainty. Our document When Cancer Doesn’t Go Away talks more about this.
If you have completed treatment, your doctors will still want to watch you closely. It’s very important to keep all follow-up appointments. Follow-up is needed to check for signs of the cancer coming back, as well as possible side effects of certain treatments. This is a good time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.
A typical follow-up schedule for MCC calls for physical exams every 3 to 6 months for the first couple of years, then every 6 to 12 months after that. Some doctors might also recommend imaging tests such as CT or PET scans, especially for people who are at higher risk of the MCC returning (such as those who had a large tumor or more advanced disease).
It’s also important for MCC survivors to do regular self-exams of their skin and lymph nodes. Most doctors recommend 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 (for example, pain, cough, fatigue, loss of appetite) that do not go away. If MCC returns it is usually within the first couple of years after treatment, but it can sometimes come back many years after it was first treated.
Patients with MCC that does not go away completely with treatment will have a follow-up schedule that’s based on their specific situation.
If MCC does come back, treatment will depend on the location of the cancer, what treatments you’ve had before, and your overall health. For more information on how recurrent cancer is treated, see the section “Treating Merkel cell carcinoma based on the extent of the disease.” For more general information on dealing with a recurrence, you might also want to see our document When Your Cancer Comes Back: Cancer Recurrence.
A person who has had MCC is also at higher risk for developing other types of skin cancer. It’s important for people who have had MCC to continue to examine their skin every month for new skin cancers, and to avoid too much sun exposure.
You can find information on how to protect your skin and instructions on how to do a skin self-exam in Skin Cancer Prevention and Early Detection.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know about your medical history. It’s important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details during and soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored digitally on a DVD, etc.
- If you had surgery, a copy of your operative report(s)
- If you stayed in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had radiation therapy, a copy of your treatment summary
- If you had chemotherapy, a list of your drugs, drug doses, and when you took them
- Contact information for doctors who have treated you and are familiar with your case
It’s also 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.
Last Medical Review: 12/31/2013
Last Revised: 12/31/2013