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 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 accept this uncertainty and are living full lives. For more on this, see Living With Uncertainty: The Fear of Cancer Recurrence.
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. When Cancer Doesn’t Go Away talks more about this.
Even 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 have.
A typical follow-up schedule for MCC might include physical exams every few months for the first couple of years, then more time between exams after that. Some doctors might also recommend imaging tests such as PET/CT 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, or 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 later.
Patients with MCC that does not go away completely with treatment will have a follow-up schedule based on their 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 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 examine their skin every month for new skin cancers, and to avoid getting too much sun exposure.
You can find information on how to examine and protect your skin in Skin Cancer Prevention and Early Detection.
Seeing a new doctor
At some point after your treatment, you may be seeing a new doctor who does not know about your medical history. It’s important to 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 (and always keep copies for yourself):
- A copy of your pathology report(s) from any biopsies or surgery
- 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 doctor wrote when you were 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 your cancer
It’s also 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.
Last Medical Review: 04/13/2015
Last Revised: 02/09/2016