Overview
Cutaneous neuroendocrine carcinoma, most commonly known as Merkel cell carcinoma (MCC), is a rare and aggressive form of skin cancer. It starts in special cells in the skin called Merkel cells, which are found near nerve endings and help with the sense of touch. When these cells grow out of control, they form a tumor — usually on sun-exposed areas of the skin like the face, neck, or arms. Merkel cell carcinoma tends to grow quickly and can spread to nearby lymph nodes and other parts of the body, including the liver, lungs, and brain. The most common sign is a painless, flesh-colored or bluish-red lump on the skin that appears suddenly and grows fast. Because it looks like many other skin conditions, it is often diagnosed late. Treatment usually involves surgery to remove the tumor, often followed by radiation therapy. In cases where the cancer has spread, immunotherapy drugs — especially checkpoint inhibitors like avelumab (Bavencio) and pembrolizumab (Keytruda) — have shown strong results and are now FDA-approved options. Early detection greatly improves outcomes, but this cancer has a high rate of coming back after treatment, making regular follow-up very important.
Also known as:
Key symptoms:
A painless, fast-growing lump or bump on the skinFlesh-colored, red, pink, or bluish skin growthLump that appears on sun-exposed areas like the face, neck, scalp, or armsSwollen lymph nodes near the skin growthSkin lump that bleeds easily or ulceratesFatigue and unexplained weight loss if cancer has spreadShortness of breath if cancer spreads to the lungsAbdominal discomfort if cancer spreads to the liverNeurological symptoms like headaches or confusion if cancer spreads to the brain
Clinical phenotype terms (17)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Late onset
Begins later in life, typically after age 50
FDA & Trial Timeline
10 eventsUniversity of Wisconsin, Madison — PHASE1, PHASE2
Merck Sharp & Dohme LLC — PHASE1, PHASE2
Institut für Klinische Krebsforschung IKF GmbH at Krankenhaus Nordwest — PHASE2
Ohio State University Comprehensive Cancer Center
Replimune Inc.
Ohio State University Comprehensive Cancer Center — NA
TuHURA Biosciences, Inc. — PHASE1
TuHURA Biosciences, Inc. — PHASE2, PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableZynyz
for the treatment of adult patients with metastatic or recurrent locally advanced Merkel cell carcinoma (MCC)
Bavencio
Treatment of adults and pediatric patients 12 years and older with metastatic Merkel cell carcinoma
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Cutaneous neuroendocrine carcinoma.
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3 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What stage is my cancer and has it spread to my lymph nodes or other organs?,Should I have a sentinel lymph node biopsy, and what will the results mean for my treatment?,Am I a candidate for immunotherapy, and which drug would you recommend for my situation?,What are the most common side effects of my treatment and when should I call you about them?,How often will I need follow-up appointments and scans after treatment?,Are there any clinical trials I should consider?,Does my immune system health or any medications I take affect my treatment options?
Common questions about Cutaneous neuroendocrine carcinoma
What is Cutaneous neuroendocrine carcinoma?
Cutaneous neuroendocrine carcinoma, most commonly known as Merkel cell carcinoma (MCC), is a rare and aggressive form of skin cancer. It starts in special cells in the skin called Merkel cells, which are found near nerve endings and help with the sense of touch. When these cells grow out of control, they form a tumor — usually on sun-exposed areas of the skin like the face, neck, or arms. Merkel cell carcinoma tends to grow quickly and can spread to nearby lymph nodes and other parts of the body, including the liver, lungs, and brain. The most common sign is a painless, flesh-colored or bluis
How is Cutaneous neuroendocrine carcinoma inherited?
Cutaneous neuroendocrine carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Cutaneous neuroendocrine carcinoma typically begin?
Typical onset of Cutaneous neuroendocrine carcinoma is late onset. Age of onset can vary across affected individuals.
Are there clinical trials for Cutaneous neuroendocrine carcinoma?
Yes — 20 recruiting clinical trials are currently listed for Cutaneous neuroendocrine carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Cutaneous neuroendocrine carcinoma?
25 specialists and care centers treating Cutaneous neuroendocrine carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Cutaneous neuroendocrine carcinoma?
1 patient support program are currently tracked on UniteRare for Cutaneous neuroendocrine carcinoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.