---
description: We’ve developed this support center for patients diagnosed with Merkel cell carcinoma, to help provide needed answers, expert guidance and resources.
title: Merkel Cell Carcinoma Patient Support Center
image: https://www.skincancer.org/wp-content/uploads/newbannersmerkel.jpg
---

[Home](https://www.skincancer.org/) › [Skin Cancer Information](https://www.skincancer.org/skin-cancer-information/) › [Merkel Cell Carcinoma](https://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/) › Merkel Cell Carcinoma Patient Support Center

# Merkel Cell Carcinoma<br> 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](#faq) below, and review the carefully curated list of [videos](#video), resources and [support organizations](#support) 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](mailto:info@SkinCancer.org).

- [MCC FAQ](#faq)
- [MCC videos](#video)
- [MCC support resources](#support)
- [MCC treatment centers](#treatment)
- [Do’s & don’ts for skin cancer patients](https://www.skincancer.org/treatment-resources/support-resources/dos-and-donts-for-skin-cancer-patients/)
- [Q&A with MCC expert, Dr. Paul Nghiem](https://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/dr-nghiem-qa/)
- [Hot topics in the care of patients with MCC](https://provider.skincancer.org/ck/hot-topics-in-the-care-of-patients-with-merkel-cell-carcinoma)

[Overview](https://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/ "Merkel Cell Carcinoma")

[Risk Factors](http://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/risk-factors/ "Merkel Cell Carcinoma Risk Factors")

[Warning Signs](http://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/mcc-warning-signs/ "Merkel Cell Carcinoma Warning Signs")

[Stages](http://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/stages/ "Merkel Cell Carcinoma Stages")

[Treatment](http://www.skincancer.org/skin-cancer-information/merkel-cell-carcinoma/mcc-treatment/ "Merkel Cell Carcinoma Treatment")

### 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.](#treatment)

#### 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](https://merkelcell.org/testing-and-diagnosis/sero/).

#### 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.

### What Causes Merkel Cell Carcinoma?

*“If your immune system is persistently suppressed, you are 15 times more likely to develop MCC.”*

Sunandana Chandra, MD  
 Medical Oncologist  
 Northwestern University

### Do MCC Patients Have a Higher Risk for COVID-19?

*“MCC can be aggressive, and delaying treatment out of fear of the virus is likely not a viable option.”*

Sunandana Chandra, MD  
 Medical Oncologist  
 Northwestern University

### MCC Treatments

*Dr. Inderjit Mehmi talks about Merkel cell carcinoma treatments.*

Inderjit Mehmi, MD  
 Medical Oncologist  
 The Angeles Clinic and Research Institute  
 Cedars-Sinai

*Dr. Mehmi talks about immunotherapy.*

### MCC Treatment Insights

*“Exciting new therapies are emerging.”*

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

### Life after a Merkel Cell Diagnosis

*Inderjit Mehmi, MD shares important insights about life after being diagnosed with MCC.*

Inderjit Mehmi, MD  
 Medical Oncologist  
 The Angeles Clinic and Research Institute  
 Cedars-Sinai

### 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. This website is supported and maintained by the Merkel Cell Carcinoma Collaborative (MC3) Institute based in Seattle, Washington.

**Website: **[merkelcell.org](https://merkelcell.org/)  
**Email: **[mccteam@uw.edu](mailto:mccteam@uw.edu)  
**Patient resources**: [merkelcell.org/resources/patient-resources/](https://merkelcell.org/resources/patient-resources/)  
**Find an MCC specialist:**  [merkelcell.org/resources/find-a-specialist/](https://merkelcell.org/resources/centers/)

---

**Merkel Cell Carcinoma Collaborative (MC3) Institute**  
 Mission: We collaborate to cure Merkel cell carcinoma.

https://mc3institute.uw.edu/

The Merkel Cell Carcinoma Collaborative (MC3) Institute was established to improve the lives of patients with MCC through world-class translational research. Based at the University of Washington and Fred Hutch Cancer Center in Seattle, MC3 has more than 100 members, including scientists and clinicians from institutions around the world.

---

**Merkel Cell Online Support Group**

Merkel cell carcinoma (MCC) patients have created an online discussion/support group with several hundred members and significant daily participation. All MCC patients, family members and caregivers are able to join this group. MCC support group members are not health-care professionals, nor do they offer medical advice. They do provide support to each other during their or their loved one’s battle against MCC.

**Fill out the **[**intake form here**](https://tinyurl.com/merkelsupport)** to submit a request to join the group and participate in the discussion.** If you have questions, you can email the support group admin team [at merkelcellsupport@gmail.com](mailto:at merkelcellsupport@gmail.com).

---

#### **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/](https://www.patientadvocate.org/connect-with-services/financial-aid-funds/)

### MCC Treatment Centers in the U.S.

#### Arizona

- **Mayo Clinic**  
   Scottsdale, Arizona  
   Phone: 1.800.446.2279  
   Website:  https://www.mayoclinic.org/departments-centers/merkel-cell-carcinoma-clinic/overview/ovc-20421781
- **University of Arizona Cancer Center**  
   Tucson, Arizona (also in Phoenix)  
   Phone: 520.694.2873  
   Website: https://cancercenter.arizona.edu/patients/research-disease-teams/melanomacutaneous-oncology

#### Arkansas

- **University of Arkansas for Medical Sciences | Winthrop P Rockefeller Cancer Institute**  
   Little Rock, Arkansas  
   Phone: 501.686.8275  
   Website: https://uamshealth.com/location/dermatology-cancer-clinic/

#### California

- **John Wayne Cancer Institute at Providence St John’s Hospital**  
   Santa Monica, CA  
   Phone: 310.829.8781  
   Website: https://www.saintjohnscancer.org/melanoma/conditions/merkel-cell-carcinoma/
- **Scripps MD Anderson**  
   La Jolla, California  
   Phone: 800.727.4777  
   Website: https://www.scripps.org/services/cancer-care/skin-cancer
- **UC Irvine Medical Center/Chao Comprehensive Cancer Center**  
   Irvine, California  
   Phone: 949.824.0606  
   Website: http://www.ucihealth.org/medical-services/skin-cancer
- **USC Norris Comprehensive Cancer Center/Keck Medicine of USC**  
   Los Angeles, CA  
   Phone: 800.872.2273  
   Website: https://cancer.keckmedicine.org/patients/cancer-programs/skin-cancer/
- **Stanford Cancer Institute – Stanford Health Care Skin Cancer Program**  
   Palo Alto, California  
   Phone: 650.498.6000  
   Website: https://stanfordhealthcare.org/medical-clinics/skin-cancer-program.html
- **University of California, San Francisco/Helen Diller Family Comprehensive Cancer Center**  
   San Francisco, California  
   Phone: 415.353.7817  
   Website: https://www.ucsfhealth.org/clinics/melanoma-and-skin-cancer-program

#### Connecticut

- **Smilow Cancer Hospital /Yale Cancer Center**  
   New Haven, Connecticut  
   Phone: 203.200.6622  
   Website: https://www.yalecancercenter.org/patient/programs/melanoma/info/info/?id=CDR441548

#### District of Columbia/Washington DC

- **MedStar Georgetown University Hospital  
  **District of Columbia/Washington, DC  
   Phone: 202.444.2223  
   Website:  https://www.medstargeorgetown.org/our-services/cancer-care/melanoma/melanoma-treatments/merkel-cell-carcinoma-treatment/
- **The George Washington University Hospital/GW Cutaneous Oncology Program**  
   District of Columbia/Washington DC  
   Phone: 202.741.2829  
   Website: https://cancercenter.gwu.edu/cancer-type-condition/merkel-cell-carcinoma

#### Florida

- **Lee Moffitt Cancer Center**  
   Tampa, Florida  
   Phone: 888.663.3488  
   Website: https://moffitt.org/cancers/Merkel-Cell-Carcinoma
- **Miami Cancer Institute**  
   Miami, Florida  
   Phone: 786.596.2000  
   Website: https://baptisthealth.net/cancer-care/adultpatients/cancer-types/skin-cancers/merkel-cell-carcinoma/about
- **Sylvester Comprehensive Cancer Center / University of Miami Health System**  
   Miami, Florida  
   Phone: 1.305.243.5302  
   Website: https://umiamihealth.org/sylvester-comprehensive-cancer-center/treatments-and-services/skin-cancers/melanoma-and-merkel-cell-carcinomas

#### Georgia

- **Emory | Winship Cancer Institute**  
   Atlanta, Georgia  
   Phone: 888.946.7447  
   Phone: 404.778.1900  
   Website: https://winshipcancer.emory.edu/patient-care/cancer-types/melanoma.html

#### Illinois

- **Robert H. Lurie Comprehensive Cancer Center of Northwestern University  
  **Chicago, Illinois  
   Phone: 312.695.0990  
   Website: https://www.cancer.northwestern.edu/types-of-cancer/skin/merkel-cell-carcinoma.html

#### Maryland

- **Johns Hopkins Medical Center/Sidney Kimmel Comprehensive Cancer Center**  
   Baltimore, Maryland  
   Phone: 410.464.6555  
   Website: https://www.hopkinsmedicine.org/health/conditions-and-diseases/merkel-cell-cancer
- **Mercy Medical Center/The Institute for Cancer Care**  
   Baltimore, MD  
   Phone: 410.332.9294  
   Website: https://mdmercy.com/centers-of-excellence/cancer/melanoma-and-skin-cancer-center

#### Massachusetts

- **Beth Israel Lahey Health/Lahey Hospital and Medical Center**  
   Burlington, MA  
   Phone: 781.744.5115  
   Website: https://www.cancer.northwestern.edu/types-of-cancer/skin/merkel-cell-carcinoma.html
- **Massachusetts General Cancer Center**  
   Boston, Massachusetts  
   Phone: 617.726.2914  
   Website: https://www.massgeneral.org/cancer-center/treatments-and-services/melanoma/merkel-cell-carcinoma/
- **Dana-Farber/Brigham and Women’s Cancer Center**  
   Boston, Massachusetts  
   Phone: 877.442.3324  
   Website: https://www.dana-farber.org/merkel-cell-carcinoma/our-approach/
- **UMass Memorial Medical Center/Affiliation with Dana Farber**  
   Worchester, MA  
   Website: https://www.umassmemorialhealthcare.org/umass-memorial-medical-center/services-treatments/cancer-care/cancers-we-treat/skin-cancer

#### Michigan

- **UMichigan Medicine Rogel Cancer Center**  
   Ann Arbor, Michigan  
   Phone: 734.936.6360  
   Website: https://www.uofmhealth.org/our-locations/rogel-cancer-center-multidisciplinary-cutaneous-oncology-clinic

#### Minnesota

- **Mayo Clinic**  
   Rochester, Minnesota  
   Phone: 507.538.3270  
   Website: https://www.mayoclinic.org/departments-centers/merkel-cell-carcinoma-clinic/overview/ovc-20421781

#### Missouri

- **Siteman Cancer Center, Barnes-Jewish Hospital/Washington University School of Medicine**  
   St. Louis, Missouri  
   Phone: 800.300.3606  
   Website: https://siteman.wustl.edu/treatment/cancer-types/skin/our-approach/

#### New Jersey

- **Rutgers Cancer Institute of New Jersey**  
   New Brunswick, New Jersey  
   Phone: 844.226.2376  
   Website: https://cinj.org/patient-care/melanoma-and-soft-tissue-oncology-program

#### New York

- **Memorial Sloan Kettering Cancer Center**  
   New York, New York  
   Phone: 800.525.2225  
   Website: https://www.mskcc.org/cancer-care/types/merkel-cell-carcinoma/merkel-cell-carcinoma-expert
- **Roswell Park Cancer Institute**  
   Buffalo, NY  
   Phone: [1.800.767.9355](tel:18007679355)  
   Website: https://www.roswellpark.org/cancer/skin/what-skin-cancer
- **University of Rochester/Wilmot Cancer Institute**  
   Rochester, NY  
   Phone: 866.494.5668  
   Website: https://www.urmc.rochester.edu/cancer-institute/cancers/skin.aspx

#### Pennsylvania

- **Fox Chase Cancer Center**  
   Philadelphia, Pennsylvania  
   Phone: 888.369.2427  
   Website: https://www.foxchase.org/clinical-care/conditions/skin-cancer/treatment/nci-pdq-merkel-cell-carcinoma
- **Thomas Jefferson University Hospitals**  
   Philadelphia, PA  
   Phone: 800.533.3669  
   Website: https://hospitals.jefferson.edu/diseases-and-conditions/merkel-cell-cancer.html

#### Oregon

- **Oregon Health & Science University/ Knight Cancer Institute**  
   Portland, Oregon  
   Phone: 503.418.3376  
   Website: https://www.ohsu.edu/knight-cancer-institute/skin-cancers-nonmelanoma

#### Ohio

- **The Ohio State University Comprehensive Cancer Center – The James**  
   Columbus, Ohio  
   Phone: 800.293.5066  
   Website: https://cancer.osu.edu/for-patients-and-caregivers/learn-about-cancers-and-treatments/cancers-conditions-and-treatment/cancer-types/skin-cancers/merkel-cell-carcinoma/screening-and-diagnosis
- **UH Cleveland Medical Center /Seidman Cancer Center**  
   Cleveland, Ohio  
   Phone: 855.525.2225  
   Website: https://www.uhhospitals.org/services/cancer-services/skin-cancer/merkel-cell-carcinoma

#### North Carolina

- **Duke University Medical Center**  
   Durham, NC  
   Phone: 919.634.6205  
   Website: https://www.dukehealth.org/treatments/cancer/skin-cancers

#### Pennsylvania

- **Fox Chase Cancer Center**  
   Philadelphia, Pennsylvania  
   Phone: 888.369.2427  
   Website: https://www.foxchase.org/clinical-care/conditions/skin-cancer/treatment/nci-pdq-merkel-cell-carcinoma
- **Thomas Jefferson University Hospitals**  
   Philadelphia, PA  
   Phone: 800.533.3669  
   Website: https://hospitals.jefferson.edu/diseases-and-conditions/merkel-cell-cancer.html

#### Tennessee

- **Vanderbilt University Medical Center/Vanderbilt-Ingram Cancer Center**  
   Nashville, TN  
   Phone: 615.936.8422  
   Website: https://vanderbilthealth.com/cancer/51376
- **West Cancer Center & Research Institute**  
   Memphis, TN  
   Phone: 901.683.0055  
   Website: https://westcancercenter.org/cancer-type/non-melanoma/

#### Texas

- **Baylor Scott & White Charles A. Sammons Cancer Center/Baylor University Medical Center**  
   Dallas, Texas  
   Phone: 844.279.3627  
   Website: https://www.bswhealth.com/specialties/cancer-care/cancers-treated/pages/skin-cancer-non-melanoma.aspx
- **Baylor St. Luke’s Medical Center/Dan L Duncan Comprehensive Cancer Center**  
   Houston, Texas  
   Phone: 713.798.2262  
   Website: https://www.bcm.edu/healthcare/specialties/oncology/cancer-types/skin-cancers
- **UT Southwe****stern Simmons Comprehensive Cancer Center**  
   Dallas, Texas  
   Phone: 214.645.8300  
   Website: https://utswmed.org/conditions-treatments/merkel-cell-carcinoma-mcc/
- **UT MD Anderson Cancer Center**  
   Houston, Texas 77030  
   Phone: 855.787.0063  
   Website: https://www.mdanderson.org/patients-family/diagnosis-treatment/care-centers-clinics/melanoma-skin-center.html

#### Utah

- **University of Utah/Huntsman Cancer Institute**  
   Salt Lake City, Utah  
   Phone: 800.824.2073  
   Website: https://healthcare.utah.edu/huntsmancancerinstitute/skin-cancer/

#### Virginia

- **Inova Melanoma and Skin Cancer Center**  
   Fairfax, Virginia  
   Phone: 571.472.4724  
   Website: https://www.inova.org/locations/inova-melanoma-and-skin-cancer-center

#### Washington

- **Fred Hutchinson Cancer Research Center/****Seattle Cancer Care Alliance**  
   Seattle, Washington  
   Phone: 855.557.0555  
   Website: https://www.seattlecca.org/diseases/merkel-cell-carcinoma

***Last updated:** August 2022*

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## The Skin Cancer Foundation Blog

[Play On, Jimmy Buffett](https://www.skincancer.org/blog/play-on-jimmy-buffett/)![JImmy Buffett Illustration]()

[Skin Cancer Information](https://www.skincancer.org/blog/category/skin-cancer-information/)

[The Skin Cancer Foundation Journal](https://www.skincancer.org/blog/category/the-skin-cancer-foundation-journal/)

### [Play On, Jimmy Buffett](https://www.skincancer.org/blog/play-on-jimmy-buffett/)

[Jimmy Buffett’s Death Puts Merkel Cell Carcinoma in the Spotlight](https://www.skincancer.org/blog/jimmy-buffetts-death-puts-merkel-cell-carcinoma-in-the-spotlight/)![The death of Jimmy Buffett sparked unprecedented interest in Merkel cell carcinoma, a rare and aggressive skin cancer.]()

[Skin Cancer Information](https://www.skincancer.org/blog/category/skin-cancer-information/)

[This Is Skin Cancer](https://www.skincancer.org/blog/category/true-stories/)

### [Jimmy Buffett’s Death Puts Merkel Cell Carcinoma in the Spotlight](https://www.skincancer.org/blog/jimmy-buffetts-death-puts-merkel-cell-carcinoma-in-the-spotlight/)

[“What’s That?” Two Simple Words That Saved a Life](https://www.skincancer.org/blog/whats-that-two-simple-words-that-saved-a-life/)![Mom, what's that?Mom, what's that? Check your skin]()

[This Is Skin Cancer](https://www.skincancer.org/blog/category/true-stories/)

[Why We Give](https://www.skincancer.org/blog/category/why-we-give/)

### [“What’s That?” Two Simple Words That Saved a Life](https://www.skincancer.org/blog/whats-that-two-simple-words-that-saved-a-life/)

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