Vulvar adenocarcinoma

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19Specialists8Treatment centers

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

Vulvar adenocarcinoma is a rare type of cancer that starts in the glandular (mucus-producing) cells of the vulva, which is the outer part of the female genitalia. Unlike the more common squamous cell carcinoma of the vulva, this type arises from gland tissue and can develop in several locations, including Bartholin's glands (small glands near the vaginal opening), sweat glands in the skin of the vulva, or from tissue that resembles the lining of the intestine (a condition called Paget's disease of the vulva with underlying adenocarcinoma). It may also sometimes spread to the vulva from a cancer that started elsewhere, such as the rectum or cervix. This cancer can cause noticeable changes in the vulvar area, including lumps, sores, itching, or unusual discharge. Because the vulva is an area many people feel uncomfortable discussing, diagnosis is often delayed. Early detection is important because the cancer can spread to nearby lymph nodes and other parts of the body if not treated promptly. Treatment usually involves surgery to remove the tumor, and may also include radiation therapy and chemotherapy depending on how advanced the cancer is. A team of specialists works together to plan the best care. While this is a serious condition, many people do well when it is caught early and treated appropriately.

Also known as:

Key symptoms:

A lump, bump, or thickening in the vulvar areaPersistent itching or burning of the vulvaPain or tenderness in the vulvar regionA sore or ulcer on the vulva that does not healUnusual discharge from the vulva or nearby glandsBleeding not related to menstruationSkin color changes or a rash on the vulvaSwelling in the groin area (possibly swollen lymph nodes)A feeling of pressure or fullness near the vaginal openingPain during sexual intercourse

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Vulvar adenocarcinoma.

View clinical trials →

No actively recruiting trials found for Vulvar adenocarcinoma at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Vulvar adenocarcinoma community →

Specialists

19 foundView all specialists →
CM
Christian S Hinrichs, MD
BETHESDA, MD
Specialist
PI on 2 active trials
AS
Ann (Annie) W Silk
Los Angeles, California
Specialist

Rare Disease Specialist

PI on 1 active trial
CD
Camila MV Moniz, Doctor
SAN ANTONIO, TX
Specialist
PI on 1 active trial
SP
Sandip P Patel
Birmingham, Alabama
Specialist

Rare Disease Specialist

PI on 1 active trial
LL
Lilie L Lin
HOUSTON, TX
Specialist
PI on 4 active trials209 Vulvar adenocarcinoma publications
DM
Dawn Pinchasik, MD
PITTSBURGH, PA
Specialist
PI on 2 active trials
SM
Sapna Syngal, MD
BOSTON, MA
Specialist
PI on 1 active trial
KM
Keith Delman, MD
ATLANTA, GA
Specialist
PI on 1 active trial
JP
JUNGYUN LEE, Ph.D.
CHELSEA, MA
Specialist
PI on 1 active trial
JP
Joanne de Hullu, MD PhD
Specialist
PI on 1 active trial
FP
Fabio Puglisi, MD, PhD
Specialist
PI on 1 active trial
CP
Clare Shaw, Phd
FOUNTAINVILLE, PA
Specialist
PI on 3 active trials

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 adenocarcinoma.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Vulvar adenocarcinoma

No recent news articles for Vulvar adenocarcinoma.

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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 and outlook?,Should I be tested for Lynch syndrome or another hereditary cancer condition?,What type of surgery do you recommend, and how will it affect the appearance and function of my vulva?,Will I need radiation or chemotherapy in addition to surgery, and what side effects should I expect?,Am I a candidate for immunotherapy, and how would we know if it might work for me?,What follow-up schedule do you recommend after treatment to watch for recurrence?,Are there clinical trials I should consider, and where can I find a specialist with experience in this rare cancer?

Common questions about Vulvar adenocarcinoma

What is Vulvar adenocarcinoma?

Vulvar adenocarcinoma is a rare type of cancer that starts in the glandular (mucus-producing) cells of the vulva, which is the outer part of the female genitalia. Unlike the more common squamous cell carcinoma of the vulva, this type arises from gland tissue and can develop in several locations, including Bartholin's glands (small glands near the vaginal opening), sweat glands in the skin of the vulva, or from tissue that resembles the lining of the intestine (a condition called Paget's disease of the vulva with underlying adenocarcinoma). It may also sometimes spread to the vulva from a cance

How is Vulvar adenocarcinoma inherited?

Vulvar adenocarcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Vulvar adenocarcinoma typically begin?

Typical onset of Vulvar adenocarcinoma is adult. Age of onset can vary across affected individuals.

Which specialists treat Vulvar adenocarcinoma?

19 specialists and care centers treating Vulvar adenocarcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.