OBSOLETE: HIV-related hepatocellular carcinoma

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Overview

HIV-related hepatocellular carcinoma (also sometimes called HIV-associated liver cancer or HCC in people living with HIV) is a type of primary liver cancer that develops in people who are infected with the human immunodeficiency virus (HIV). This condition is listed as 'obsolete' in the Orphanet rare disease database, meaning it has been reclassified or merged into broader disease categories. However, the underlying condition remains clinically important. HIV weakens the immune system over time, and people living with HIV have a higher risk of developing certain cancers, including liver cancer. This increased risk is largely driven by co-infections that are more common in people with HIV, especially hepatitis B virus (HBV) and hepatitis C virus (HCV), both of which are major causes of liver damage and liver cancer. Hepatocellular carcinoma (HCC) is the most common type of primary liver cancer. It starts in the main liver cells called hepatocytes. In people with HIV, the liver may be damaged by chronic viral hepatitis, long-term antiretroviral medications, alcohol use, or fatty liver disease, all of which can raise the risk of HCC. Symptoms often appear late and can include abdominal pain or swelling, unexplained weight loss, yellowing of the skin or eyes (jaundice), fatigue, and loss of appetite. Treatment depends on how advanced the cancer is and how well the liver is functioning. Options may include surgery to remove the tumor, liver transplantation, ablation therapies, targeted drug therapy (such as sorafenib), immunotherapy, or palliative care. Managing HIV with antiretroviral therapy (ART) is also a key part of overall care, as keeping the immune system as strong as possible can improve treatment outcomes.

Key symptoms:

Pain or discomfort in the upper right side of the abdomenUnexplained weight lossFeeling very tired or weakLoss of appetiteYellowing of the skin or whites of the eyes (jaundice)Swelling or bloating in the bellyNausea or vomitingFeeling full quickly after eatingDark-colored urinePale or chalky stoolsFever without a clear causeEasy bruising or bleeding

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 OBSOLETE: HIV-related hepatocellular carcinoma.

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No actively recruiting trials found for OBSOLETE: HIV-related hepatocellular carcinoma at this time.

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

Search ClinicalTrials.gov ↗Join the OBSOLETE: HIV-related hepatocellular carcinoma community →

No specialists are currently listed for OBSOLETE: HIV-related hepatocellular carcinoma.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 OBSOLETE: HIV-related hepatocellular carcinoma.

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Community

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Latest news about OBSOLETE: HIV-related hepatocellular 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 liver cancer, and what does that mean for my treatment options?,How will my HIV medications interact with my cancer treatment, and will any of them need to be changed?,Am I a candidate for surgery or liver transplantation?,How often should I have imaging or blood tests to monitor my cancer?,What side effects should I watch for with my cancer treatment, and when should I call you?,Are there clinical trials available for people living with HIV and liver cancer that I might qualify for?,What support services are available to help me manage both my HIV and my cancer at the same time?

Common questions about OBSOLETE: HIV-related hepatocellular carcinoma

What is OBSOLETE: HIV-related hepatocellular carcinoma?

HIV-related hepatocellular carcinoma (also sometimes called HIV-associated liver cancer or HCC in people living with HIV) is a type of primary liver cancer that develops in people who are infected with the human immunodeficiency virus (HIV). This condition is listed as 'obsolete' in the Orphanet rare disease database, meaning it has been reclassified or merged into broader disease categories. However, the underlying condition remains clinically important. HIV weakens the immune system over time, and people living with HIV have a higher risk of developing certain cancers, including liver cancer

How is OBSOLETE: HIV-related hepatocellular carcinoma inherited?

OBSOLETE: HIV-related hepatocellular carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does OBSOLETE: HIV-related hepatocellular carcinoma typically begin?

Typical onset of OBSOLETE: HIV-related hepatocellular carcinoma is adult. Age of onset can vary across affected individuals.