Vulvar squamous cell carcinoma

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4Active trials38Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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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

Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

4 events
Dec 2024STRatIfication of Vulvar SCC by HPV and p53 Status to Guide Excision

Canadian Cancer Trials Group — NA

TrialRECRUITING
Jan 2024A Three-arm Randomized Phase II Study of Dostarlimab Alone or With Bevacizumab Versus Nonplatinum Chemotherapy in Recurrent Gynecological Clear Cell Carcinoma: DOVE (APGOT-OV7/ ENGOT-ov80 Study)

Yonsei University — PHASE2

TrialRECRUITING
Feb 2022Retrospective Study of Brachytherapy

Zhejiang Cancer Hospital

TrialRECRUITING
Feb 2021Screening for Anal Cancer in Women With High-grade Vulvar Dysplasia or Vulvar Cancer.

Dr. Danielle Vicus — NA

TrialRECRUITING

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 →

Clinical Trials

4 recruitingView all trials with filters →
Phase 21 trial
A Three-arm Randomized Phase II Study of Dostarlimab Alone or With Bevacizumab Versus Nonplatinum Chemotherapy in Recurrent Gynecological Clear Cell Carcinoma: DOVE (APGOT-OV7/ ENGOT-ov80 Study)
Phase 2
Actively Recruiting
PI: JUNGYUN LEE, Ph.D. (Severance Hospital, Yonsei University Health Syste) · Sites: Kurume, Fukuoka; Fukushima, Fukushima +16 more · Age: 1899 yrs
N/A2 trials
STRatIfication of Vulvar SCC by HPV and p53 Status to Guide Excision
N/A
Actively Recruiting
PI: Amy Jamieson (University of British Columbia, Vancouver, BC, Can) · Sites: Kelowna, British Columbia; Vancouver, British Columbia +8 more · Age: 1899 yrs
Screening for Anal Cancer in Women With High-grade Vulvar Dysplasia or Vulvar Cancer.
N/A
Actively Recruiting
PI: Danielle Vicus, MD (Odette Cancer Centre) · Sites: Toronto, Ontario · Age: 4099 yrs
Other1 trial
Retrospective Study of Brachytherapy
Actively Recruiting
· Sites: Hangzhou, Zhejiang · Age: 1880 yrs

Specialists

Showing 25 of 38View all specialists →
AM
Amy Jamieson, MD
Specialist
PI on 1 active trial1 Vulvar squamous cell carcinoma publication
OP
Oladapo Yeku, MD, PHD
BOSTON, MA
Specialist
PI on 1 active trial
DM
David Moore
Specialist
PI on 1 active trial109 Vulvar squamous cell carcinoma publications
AS
Adela Saco
Specialist
3 Vulvar squamous cell carcinoma publications
LH
Lars-Christian Horn
Specialist
3 Vulvar squamous cell carcinoma publications
LM
Lorena Marimon
Specialist
3 Vulvar squamous cell carcinoma publications
LH
Lynn Hoang
Specialist
3 Vulvar squamous cell carcinoma publications
NR
Natalia Rakislova
Specialist
3 Vulvar squamous cell carcinoma publications
AT
Aureli Torné
Specialist
3 Vulvar squamous cell carcinoma publications
MP
Marta Del Pino
Specialist
3 Vulvar squamous cell carcinoma publications
NV
Naiara Vega
Specialist
3 Vulvar squamous cell carcinoma publications
AJ
Amy Jamieson
Specialist
6 Vulvar squamous cell carcinoma publications
JM
Jessica N McAlpine
Specialist
5 Vulvar squamous cell carcinoma publications
ET
Emily F Thompson
Specialist
4 Vulvar squamous cell carcinoma publications
JS
Janine Senz
Specialist
4 Vulvar squamous cell carcinoma publications
AK
Anthony Karnezis
SACRAMENTO, CA
Specialist
3 Vulvar squamous cell carcinoma publications
JH
Jutta Huvila
Specialist
3 Vulvar squamous cell carcinoma publications
BG
Blake Gilks
Specialist
3 Vulvar squamous cell carcinoma publications
FP
Frederic Amant, MD, PHD
Specialist
PI on 2 active trials
CM
Christian S Hinrichs, MD
BETHESDA, MD
Specialist
PI on 2 active trials
SD
Scott M Norberg, D.O.
PHILADELPHIA, PA
Specialist
PI on 4 active trials
RM
Roxana S. Dronca, MD
Jacksonville, Florida
Specialist

Rare Disease Specialist

PI on 3 active trials
SP
Sandip P Patel
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 1 active trial
AS
Ann (Annie) W Silk
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 1 active trial
FP
Frederic Amant, Prof.
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Vulvar squamous cell carcinoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Vulvar squamous cell carcinoma

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Caregiver 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 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.