Overview
Fibrolamellar hepatocellular carcinoma (often called fibrolamellar carcinoma or FLC) is a rare type of liver cancer that mainly affects young people, typically adolescents and young adults. Unlike the more common form of liver cancer (hepatocellular carcinoma or HCC), fibrolamellar carcinoma usually develops in people who have healthy livers with no history of liver disease, cirrhosis, or hepatitis infection. This makes it quite different from typical liver cancer. The tumor gets its name from the way it looks under a microscope — the cancer cells are surrounded by bands (lamellae) of fibrous tissue. The disease often grows slowly at first and may not cause symptoms until the tumor becomes large. Common symptoms include a mass or pain in the upper right part of the abdomen, unintended weight loss, fatigue, and sometimes jaundice (yellowing of the skin and eyes). Because symptoms can be vague, the cancer is sometimes found at an advanced stage. The main treatment for fibrolamellar carcinoma is surgery to remove the tumor, which offers the best chance for long-term survival. When the cancer is caught early and can be completely removed, outcomes are more favorable. Unfortunately, standard chemotherapy drugs used for typical liver cancer have shown limited effectiveness against fibrolamellar carcinoma. Liver transplantation may be considered in select cases. Research is ongoing to find targeted therapies that work specifically against this cancer, and clinical trials are actively exploring new treatment options.
Key symptoms:
Abdominal pain, especially in the upper right areaA lump or mass that can be felt in the abdomenUnintended weight lossLoss of appetiteFatigue and feeling tiredJaundice (yellowing of the skin and eyes)Nausea or vomitingFeeling full quickly after eatingEnlarged liverShoulder pain (referred pain from the liver)Swollen abdomen from fluid buildup (ascites)Fever of unknown cause
Sporadic
Usually appears on its own, not inherited from a parent
Juvenile
Begins in the teen years
FDA & Trial Timeline
8 eventsSidney Kimmel Comprehensive Cancer Center at Johns Hopkins — PHASE1
University Hospital Tuebingen — PHASE1
Children's Oncology Group — PHASE1, PHASE2
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins — PHASE1, PHASE2
University Hospital Tuebingen — PHASE1
St. Jude Children's Research Hospital — PHASE1, PHASE2
M.D. Anderson Cancer Center — PHASE1, PHASE2
Allison O'Neill, MD — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Fibrolamellar hepatocellular carcinoma.
7 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Fibrolamellar hepatocellular carcinoma.
Community
No community posts yet. Be the first to share your experience with Fibrolamellar hepatocellular carcinoma.
Start the conversation →Latest news about Fibrolamellar hepatocellular carcinoma
Disease timeline:
New recruiting trial: Peptide Vaccine for Fibrolamellar Hepatocellular Carcinoma Patients and Other Tumor Entities Carrying the Driver Fusion DNAJB1-PRKACA
A new clinical trial is recruiting patients for Fibrolamellar hepatocellular carcinoma
New recruiting trial: Safety and Efficacy of Cyclophosphamide, Sorafenib, Bevacizumab, and Atezolizumab in Pediatric Solid Tumor Patients
A new clinical trial is recruiting patients for Fibrolamellar hepatocellular carcinoma
New recruiting trial: Nivolumab, Fluorouracil, and Interferon Alpha 2B for the Treatment of Unresectable Fibrolamellar Cancer
A new clinical trial is recruiting patients for Fibrolamellar hepatocellular carcinoma
New recruiting trial: FusionVAC22_01: Fusion Transcript-based Peptide Vaccine Combined with Immune Checkpoint Inhibition
A new clinical trial is recruiting patients for Fibrolamellar hepatocellular carcinoma
New recruiting trial: DRP-104 (Glutamine Antagonist) in Combination With Durvalumab in Patients With Advanced Stage Fibrolamellar Carcinoma (FLC)
A new clinical trial is recruiting patients for Fibrolamellar hepatocellular carcinoma
New recruiting trial: Checkpoint Inhibition In Pediatric Hepatocellular Carcinoma
A new clinical trial is recruiting patients for Fibrolamellar hepatocellular carcinoma
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.Can my tumor be completely removed with surgery, and what are the risks of the operation?,Has the cancer spread beyond the liver, and how does that affect my treatment options?,Was the DNAJB1-PRKACA fusion gene found in my tumor, and what does that mean for my treatment?,Are there any clinical trials available for fibrolamellar carcinoma that I might be eligible for?,What is the plan for monitoring me after treatment to catch any recurrence early?,Should I be seen at a specialized cancer center with experience treating fibrolamellar carcinoma?,What support services are available to help me cope with the emotional and practical challenges of this diagnosis?
Common questions about Fibrolamellar hepatocellular carcinoma
What is Fibrolamellar hepatocellular carcinoma?
Fibrolamellar hepatocellular carcinoma (often called fibrolamellar carcinoma or FLC) is a rare type of liver cancer that mainly affects young people, typically adolescents and young adults. Unlike the more common form of liver cancer (hepatocellular carcinoma or HCC), fibrolamellar carcinoma usually develops in people who have healthy livers with no history of liver disease, cirrhosis, or hepatitis infection. This makes it quite different from typical liver cancer. The tumor gets its name from the way it looks under a microscope — the cancer cells are surrounded by bands (lamellae) of fibrous
How is Fibrolamellar hepatocellular carcinoma inherited?
Fibrolamellar hepatocellular carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Fibrolamellar hepatocellular carcinoma typically begin?
Typical onset of Fibrolamellar hepatocellular carcinoma is juvenile. Age of onset can vary across affected individuals.
Are there clinical trials for Fibrolamellar hepatocellular carcinoma?
Yes — 7 recruiting clinical trials are currently listed for Fibrolamellar hepatocellular carcinoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Fibrolamellar hepatocellular carcinoma?
25 specialists and care centers treating Fibrolamellar hepatocellular carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.