National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Childhood hepatocellular carcinoma


Other Names:
Childhood Carcinoma of Liver Cell; Childhood Hepatoma; Childhood Liver Cell Carcinoma; Childhood Carcinoma of Liver Cell; Childhood Hepatoma; Childhood Liver Cell Carcinoma; Pediatric Carcinoma of Liver Cell; Pediatric Hepatocellular Carcinoma; Pediatric Hepatoma; Pediatric Liver Cell Carcinoma See More
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Childhood hepatocellular carcinoma (childhood HCC) is a rare type of malignant (cancerous) tumor that forms in the cells and tissues of the liver.[1] Childhood HCC is usually found in older children and adolescents (10-14 years), but has been found in children younger than 5.[2] Symptoms may include a mass in the abdomen, a swollen and painful abdomen, weight loss, poor appetite, yellowing of the skin and eyes (jaundice), vomiting, fever, itchy skin, and a decreased number of red blood cells (anemia).[3][1] The cause of childhood HCC is not well understood; however, underlying disorders that cause liver dysfunction (ex. hepatitis B) and congenital or genetic disorders that affect the liver (ex. tyrosinemia type 1) may increase the risk for childhood HCC to occur.[1][2] Treatment options vary depending on a variety of factors including the stage of the cancer and may include surgery to remove the tumor and chemotherapy.[1]
Last updated: 7/14/2016
The symptoms of childhood hepatocellular carcinoma (childhood HCC) are similar to the symptoms found in other liver cancers, commonly presenting with an abdominal mass and pain. Other common symptoms include abdominal swelling and discomfort, weight loss, anorexia, fever, vomiting, and yellowing of the skin and eyes (jaundice).[3][1][2]
Last updated: 7/14/2016

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 14 |
Medical Terms Other Names
Learn More:
HPO ID
80%-99% of people have these symptoms
Abdominal pain
Pain in stomach
Stomach pain
[ more ] 		0002027
Elevated alpha-fetoprotein 0006254
Hepatic fibrosis 0001395
Hepatomegaly
Enlarged liver
0002240
30%-79% of people have these symptoms
Epigastric pain 0410019
Fatigue
Tired
Tiredness
[ more ] 		0012378
Hepatic necrosis 0002605
Portal vein thrombosis
Blood clot in portal vein
0030242
Vomiting
Throwing up
0002013
Percent of people who have these symptoms is not available through HPO
Autosomal dominant inheritance 0000006
Hepatocellular carcinoma 0001402
Micronodular cirrhosis 0001413
Somatic mutation 0001428
Subacute progressive viral hepatitis 0006572
Showing of 14 |
Last updated: 7/1/2020
The cause of childhood hepatocellular carcinoma (childhood HCC) is not well understood. Unlike adult HCC, childhood HCC may be found in individuals with no underlying liver disease.[1]

Children living in regions of the world where the hepatitis B virus is common have been reported to have a much greater risk of developing this disease. Chronic infection by hepatitis C virus has also been linked to the development of childhood HCC.[4] Childhood HCC has also been reported to develop in the presence of liver disease, cirrhosis, and genetic disorders such as tyrosinemia type 1, glycogen storage disease type 1, and glycogen storage disease type IV.[2]

In addition, various other reported risk factors for developing childhood HCC include: male sex, family history of this carcinoma, and exposure to aflatoxin by food contamination.[4][3]

Last updated: 7/14/2016
The treatment for childhood hepatocellular carcinoma (childhood HCC) is dependent on a number of factors including the PRETEXT and POSTTEXT group. This is a way of describing the tumor before treatment (PRETEXT) and after treatment (POSTTEXT). The course of treatment is additionally dependent on whether or not a tumor can be initially removed with surgery and whether the cancer has spread (metastasized) to other parts of the body.[2][5] 

Treatment options for a tumor that can be removed by surgery at the time of diagnosis may include:[2][5]
  • Surgery alone to remove the tumor
  • Surgery and chemotherapy
  • Combination chemotherapy followed by surgery to remove the tumor
Treatment options for a tumor that cannot be removed by surgery at the time of diagnosis may include:[2][5][1]
Treatment for a childhood HCC that has spread to other parts of the body may include a combination of chemotherapy and surgery to remove as much of the tumor from the liver as possible as well as other places where the cancer has spread. If the childhood HCC is related to a hepatitis B viral infection, treatment may additionally include antiviral medications.[5]
Last updated: 7/14/2016

Management Guidelines

  • The National Cancer Institute offers information for health professionals on the treatment of childhood liver cancer including Childhood hepatocellular carcinoma
The frequency of childhood hepatocellular carcinoma (childhood HCC) varies significantly worldwide. It is estimated to occur in about one out of two million people per year.[3][2] Males tend to be diagnosed more often than females.[2] Childhood HCC is found more commonly in sub-Saharan Africa and Southeast Asia. Researcher suggest this is due to a higher incidence of hepatitis B and aflatoxin exposure.[1]
Last updated: 7/14/2016

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

Related diseases are conditions that have similar signs and symptoms. A health care provider may consider these conditions in the table below when making a diagnosis. Please note that the table may not include all the possible conditions related to this disease.

Conditions with similar signs and symptoms from Orphanet
The main differential diagnosis is hepatoblastoma, the most common hepatic tumor in the pediatric population in Western countries. Others include focal nodular hyperplasia (FNH), hepatic adenoma and undifferentiated embryonal sarcoma, as well as other less common liver malignancies.
Visit the Orphanet disease page for more information.

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition. 
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Organizations Providing General Support

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

  • Good Days provides help to patients with life-altering conditions. Assistance includes help with the cost of medications and travel.

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • Children's Hospital Boston Web site has an information page on hepatocellular carcinoma, childhood. Click on the link above to view this information page.
  • MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
  • The Merck Manuals Online Medical Library provides information on this condition for patients and caregivers. 
  • The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Childhood hepatocellular carcinoma. Click on the link to view a sample search on this topic.

News

Other Conferences

  • The National Institute of Diabetes and Digestive and Kidney Diseases, National Cancer Institute, National Institute of Biomedical Imaging and Bioengineering, Department of Veteran Affairs, and Fogarty International Center sponsored a conference on hepatocellular carcinoma on April 1-3, 2004 to discuss the screening, diagnosis, and management of this type of cancer. You can view the agenda as well as a list of speakers by clicking here.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • What causes hepatocellular carcinoma in children? Was it environmental or genetic factors? See answer


  1. Pr Piotr CZAUDERNA. Pediatric hepatocellular carcinoma. Orphanet. November 2014; http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=33402.
  2. Deirdre Kelly, Khalid Sharif, Rachel M. Brown, Bruce Morland. Hepatocellular Carcinoma in Children. Clin Liver Dis. May 2015; 19(2):433-447. http://www.ncbi.nlm.nih.gov/pubmed/25921672.
  3. Paulette Mehta. Pediatric Hepatocellular Carcinoma. Medscape. November 5, 2015; http://emedicine.medscape.com/article/986988.
  4. Rosenthal P. Hepatocarcinoma in viral and metabolic liver disease.. Journal of Pediatric Gastroenterology and Nutrition. 2008; http://www.ncbi.nlm.nih.gov/pubmed/18367947. Accessed 7/14/2016.
  5. Childhood Liver Cancer Treatment (PDQ®)–Patient Version. National Cancer Institute. June 20, 2016; http://www.cancer.gov/types/liver/patient/child-liver-treatment-pdq#link/_247_toc.