Overview
Vulvar squamous cell carcinoma (also called vulvar SCC or squamous cell cancer of the vulva) is a type of cancer that starts in the flat, skin-like cells that cover the outer female genitalia, known as the vulva. This area includes the labia majora, labia minora, clitoris, and the opening of the vagina. It is the most common type of vulvar cancer, making up about 90% of all vulvar cancers. The cancer usually grows slowly and often starts from pre-cancerous changes in the skin called vulvar intraepithelial neoplasia (VIN). There are two main pathways: one linked to infection with high-risk human papillomavirus (HPV), which tends to affect younger women, and another not linked to HPV, which is more common in older women and often arises from a skin condition called lichen sclerosus. Symptoms can include persistent itching, pain, a lump or sore on the vulva, skin color changes, and bleeding not related to periods. Treatment depends on how advanced the cancer is and typically involves surgery to remove the tumor, sometimes along with nearby lymph nodes. Radiation therapy and chemotherapy may also be used, especially for more advanced cases or when surgery alone is not enough. When caught early, this cancer is very treatable and outcomes are generally good. Regular gynecological check-ups and awareness of changes in the vulvar area are key to early detection.
Also known as:
Key symptoms:
Persistent itching or burning on the vulvaA lump, bump, or thickened area of skin on the vulvaAn open sore or ulcer on the vulva that does not healPain or tenderness in the vulvar areaBleeding from the vulva not related to menstruationChanges in skin color on the vulva, such as white, red, or darkened patchesSkin that looks rough, scaly, or warty on the vulvaSwollen lymph nodes in the groinDischarge or unusual odorPainful urination if the tumor is near the urethra
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsCanadian Cancer Trials Group — NA
Yonsei University — PHASE2
Dr. Danielle Vicus — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Vulvar squamous cell carcinoma.
4 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
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
Travel Grants
No travel grants are currently matched to Vulvar squamous cell carcinoma.
Community
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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 what does that mean for my treatment options?,Do I need surgery, and if so, how much tissue will be removed and what will recovery look like?,Will I need radiation or chemotherapy in addition to surgery?,What are the chances the cancer will come back, and how will we monitor for that?,How might treatment affect my sexual function, urinary function, and quality of life?,Are there any clinical trials I might be eligible for?,Should I be tested for HPV or have genetic counseling given my personal or family history?
Common questions about Vulvar squamous cell carcinoma
What is Vulvar squamous cell carcinoma?
Vulvar squamous cell carcinoma (also called vulvar SCC or squamous cell cancer of the vulva) is a type of cancer that starts in the flat, skin-like cells that cover the outer female genitalia, known as the vulva. This area includes the labia majora, labia minora, clitoris, and the opening of the vagina. It is the most common type of vulvar cancer, making up about 90% of all vulvar cancers. The cancer usually grows slowly and often starts from pre-cancerous changes in the skin called vulvar intraepithelial neoplasia (VIN). There are two main pathways: one linked to infection with high-risk hum
How is Vulvar squamous cell carcinoma inherited?
Vulvar squamous cell carcinoma follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Vulvar squamous cell carcinoma typically begin?
Typical onset of Vulvar squamous cell carcinoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Vulvar squamous cell carcinoma?
Yes — 4 recruiting clinical trials are currently listed for Vulvar squamous cell carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Vulvar squamous cell carcinoma?
25 specialists and care centers treating Vulvar squamous cell carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.