Living with Fibrolamellar hepatocellular carcinoma
A rare type of liver cancer that appears in teenagers and young adults who have no other liver disease.
Understanding Fibrolamellar hepatocellular carcinoma
Symptoms are not specific and may include a belly mass, belly discomfort or pain, tiredness, and weight loss. Some people have no symptoms. A scan shows a single, well-defined mass, and a biopsy confirms the diagnosis. The usual liver cancer marker in the blood (alpha fetoprotein) is normal.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists:
- Belly mass
- Belly discomfort or pain
- Tiredness (fatigue)
- Weight loss
- No symptoms in some people
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists and digestive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Blue Faery The Adrienne Wilson Liver Cancer Association and Fibrolamellar Cancer Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists)
- Expert care
- Expert lists: Blue Faery The Adrienne Wilson Liver Cancer Association, Fibrolamellar Cancer Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Blue Faery The Adrienne Wilson Liver Cancer Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: fhcc; fibrolamellar cancer; fibrolamellar carcinoma; fibrolamellar carcinoma of liver cells; fibrolamellar carcinoma of the liver cells; fibrolamellar hepatocarcinoma
Patient organizations
- Blue Faery The Adrienne Wilson Liver Cancer AssociationFibrolamellar hepatocellular carcinoma · United States
- Fibrolamellar Cancer FoundationFibrolamellar hepatocellular carcinoma · United States
- American Cancer SocietyFibrolamellar hepatocellular carcinoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Fibrolamellar hepatocellular carcinoma.
Explore research for Fibrolamellar hepatocellular carcinoma
Explore actively recruiting Fibrolamellar hepatocellular carcinoma studies with HealthSpark.
Find actively recruiting studies for Fibrolamellar hepatocellular carcinoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Fibrolamellar hepatocellular carcinoma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Fibrolamellar hepatocellular carcinoma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Fibrolamellar hepatocellular carcinoma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.