Overview
Rare tumors of the gallbladder and extrahepatic biliary tract are uncommon growths that develop in the gallbladder or the bile ducts outside the liver. The biliary tract is the system of tubes that carries bile from the liver and gallbladder to the small intestine, where it helps digest fats. These rare tumors include unusual types that do not fall into the more common categories of gallbladder cancer (adenocarcinoma) or typical cholangiocarcinoma. They may include neuroendocrine tumors, sarcomas, lymphomas, granular cell tumors, and other very uncommon tumor types arising in these locations. Symptoms often develop slowly and may not appear until the tumor has grown large enough to block bile flow. Common signs include yellowing of the skin and eyes (jaundice), pain in the upper right abdomen, unexplained weight loss, nausea, and changes in stool color. Because these tumors are so rare, they can be difficult to diagnose and may be discovered incidentally during surgery for gallstones or other conditions. Treatment depends on the specific tumor type, its size, location, and whether it has spread. Surgery to remove the tumor is the primary treatment when possible. Chemotherapy, radiation therapy, or targeted therapies may also be used depending on the tumor subtype. Because of their rarity, treatment plans are often individualized, and patients may benefit from care at specialized cancer centers with experience in biliary tract tumors.
Also known as:
Key symptoms:
Yellowing of the skin and eyes (jaundice)Pain in the upper right side of the abdomenUnexplained weight lossNausea and vomitingLoss of appetitePale or clay-colored stoolsDark urineItchy skinA lump or mass in the abdomenFeverBloating or feeling full quicklyFatigue and general weakness
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
2 eventsHospital Universitari de Bellvitge — NA
Seagen, a wholly owned subsidiary of Pfizer — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Rare tumor of gallbladder and extrahepatic biliary tract.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Rare tumor of gallbladder and extrahepatic biliary tract.
Community
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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 specific type of rare tumor do I have, and how does that affect my treatment options?,Has molecular or genetic testing been done on my tumor, and are there any targeted therapies that might work for me?,Is surgery an option for my tumor, and what would that involve?,Are there any clinical trials available for my specific tumor type?,What are the expected side effects of the recommended treatment?,Should I seek a second opinion at a specialized hepatobiliary cancer center?,What supportive care services are available to help me manage symptoms and quality of life?
Common questions about Rare tumor of gallbladder and extrahepatic biliary tract
What is Rare tumor of gallbladder and extrahepatic biliary tract?
Rare tumors of the gallbladder and extrahepatic biliary tract are uncommon growths that develop in the gallbladder or the bile ducts outside the liver. The biliary tract is the system of tubes that carries bile from the liver and gallbladder to the small intestine, where it helps digest fats. These rare tumors include unusual types that do not fall into the more common categories of gallbladder cancer (adenocarcinoma) or typical cholangiocarcinoma. They may include neuroendocrine tumors, sarcomas, lymphomas, granular cell tumors, and other very uncommon tumor types arising in these locations.
How is Rare tumor of gallbladder and extrahepatic biliary tract inherited?
Rare tumor of gallbladder and extrahepatic biliary tract follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare tumor of gallbladder and extrahepatic biliary tract typically begin?
Typical onset of Rare tumor of gallbladder and extrahepatic biliary tract is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Rare tumor of gallbladder and extrahepatic biliary tract?
Yes — 2 recruiting clinical trials are currently listed for Rare tumor of gallbladder and extrahepatic biliary tract on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Rare tumor of gallbladder and extrahepatic biliary tract?
1 specialists and care centers treating Rare tumor of gallbladder and extrahepatic biliary tract are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.