Merkel Cell Carcinoma
Patient Support Center

Help for Patients & Caregivers

Welcome to the Merkel Cell Carcinoma (MCC) Patient Support Center. A diagnosis of MCC can be physically, emotionally and financially challenging. Because it is such a rare disease, you may be struggling to find reliable information and answers to the question: “What should I do next?”

You’re not alone. We’ve developed this support center to address the information gap around MCC, and help you find the answers you are looking for. Take a look at the Frequently Asked Questions below, and review the carefully curated list of videos, resources and support organizations that focus on guiding you through the challenges that arise during your diagnosis and treatment.

We realize that this is a difficult time. There is a lot of information to read and understand, and we are here to help guide the process. If you have any questions or concerns, please reach out to us at info@SkinCancer.org.

Frequently Asked Questions

Q: I’ve been diagnosed with MCC and I am very concerned. What should I do next?

A: First and foremost, while MCC is rare and dangerous, it is treatable. Due to a tremendous amount of work and research by dedicated health-care professionals, MCC treatment options and knowledge have surged.

What to do next:

The most important thing for you to do is to seek treatment at an academic center with specialized expertise in caring for people with MCC. Dermatologists, surgeons, medical oncologists and radiation oncologists need to confer to determine the best plan for a given case. It is important that they all understand the aggressiveness of MCC and all communicate with each other and you in a concise manner.

Find an MCC treatment center.

Q: How important is it to consider multidisciplinary care at a cancer center for MCC treatment?

A: “It’s so important, for several reasons. Depending on your sources of data, MCC is three to five times more deadly than melanoma, so it’s a serious diagnosis. And, due to its rarity, a lot of physicians are not familiar with the specific care that’s indicated. Updated information is not in many textbooks because MCC management has been so rapidly evolving over the past five to 10 years. Going to a place that truly offers expert multidisciplinary care is very important.” – Paul Nghiem, MD, PhD

Dr. Nghiem is director of the Skin Oncology Clinical Program at the Seattle Cancer Care Alliance and head of Dermatology at the University of Washington School of Medicine. Considered one of the foremost experts on MCC in the U.S., Dr. Nghiem has worked tirelessly to promote research and collaboration to create better outcomes for MCC patients.

Q: What do specialists advise about timing from diagnosis to treatment?

A: “When the diagnosis of MCC comes up, most doctors and patients quickly realize this is something to take seriously. MCC is aggressive and dangerous, and we certainly like to get people into evaluation, scans and treatment within, say, two weeks — to get a good plan and act on it. But it is important not to rush; get the facts before you jump.” – Paul Nghiem, MD, PhD

Q: What is the Merkel cell polyomavirus?

A: Evidence of the Merkel cell polyomavirus can be found in about 80 percent of Merkel cell tumors. The virus, discovered in 2008, lives in the skin of most people, without signs and symptoms, and without ever developing into MCC. Since the virus is common and MCC is extremely rare, scientists are uncertain about how or why the virus causes the disease in some people.

Your care team can identify whether the virus is the cause of your MCC by administering the AMERK biomarker blood test. The test is also administered at intervals to check for increases in antibodies, to help detect recurrences early, when the tumor will be more effectively treatable. Learn more here.

Q: How rare is MCC?

A: MCC is about 40 times more rare than melanoma. Each year in the U.S., approximately 3,000 new cases of MCC are diagnosed. The number of cases diagnosed has increased dramatically as we have learned more about MCC in the past decade.

MCC Treatment Insights

“Exciting new therapies are emerging.”

Sandra D’Angelo, MD
Clinical Oncologist
Memorial Sloan-Kettering Cancer Center

Luis's MCC Journey

When Luis found out he had Merkel cell carcinoma, a rare form of skin cancer, he was determined to beat it. He shares his harrowing journey from diagnosis to treatment.

MCC Support Resources

MerkelCell.org

MerkelCell.org was created by physicians and researchers who work on MCC to answer frequently asked questions and provide accurate information about this disease.

Website: merkelcell.org
Email: mccteam@uw.edu
Patient resources: merkelcell.org/resources/patient-resources/
Find an MCC specialist: merkelcell.org/resources/find-a-specialist/


Patient Advocate Foundation

The Patient Advocate Foundation offers a fund for patients with MCC. Once approved, the fund provides one-time assistance of $450 to cover transportation-related expenses connected to treatment appointments. Eligible patients include those who are undergoing active treatment, have received treatment within the previous six months, or will be receiving treatment in the next 60 days. Each patient must meet household income guidelines and provide diagnosis documentation in order to finalize the application.

Website: www.patientadvocate.org/connect-with-services/financial-aid-funds/


Merkel Cell Carcinoma Seattle Support Group

This support group is a flexible, open discussion group located in Seattle, WA for anyone touched by Merkel cell carcinoma (MCC), including patients, spouses, family and friends. This is an informal opportunity to meet others coping with MCC, share stories and information, answer questions and provide support. They have first-hand knowledge and experience to share about treatments, clinical research trials and coping with MCC.

Website: sites.google.com/site/merkelcellcarcinomaseattle/home

MCC Treatment Centers in the U.S.

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Last updated: July 2020

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