Overview
Non-central nervous system-localized embryonal carcinoma is a rare type of cancer that belongs to the group of germ cell tumors. Germ cells are the cells that normally develop into eggs or sperm, but sometimes these cells can form tumors in various parts of the body outside the brain and spinal cord. When this type of embryonal carcinoma occurs in the liver, it is classified under ICD-10 code C22.7. Embryonal carcinoma is one of the most aggressive forms of germ cell tumors and can occur in the testicles, ovaries, or other locations in the body such as the chest (mediastinum), abdomen, or liver. These tumors are made up of very immature cells that can grow quickly and spread to other parts of the body. Symptoms depend on where the tumor is located. When it affects the liver, patients may notice abdominal pain, a mass or swelling in the belly, weight loss, and general feelings of being unwell. Blood tests may show elevated levels of certain tumor markers like alpha-fetoprotein (AFP) and human chorionic gonadotropin (hCG), which help doctors identify and monitor the disease. Treatment typically involves a combination of surgery and chemotherapy. Platinum-based chemotherapy regimens, particularly those containing cisplatin, are the standard of care and have significantly improved outcomes for patients with germ cell tumors. Despite its aggressive nature, many patients respond well to treatment, especially when the disease is caught early.
Also known as:
Key symptoms:
Abdominal pain or discomfortSwelling or lump in the abdomenUnexplained weight lossLoss of appetiteFatigue and tirednessNausea or vomitingFeeling full quickly after eatingJaundice (yellowing of the skin or eyes)Fever of unknown causeElevated tumor markers in blood testsGeneral feeling of being unwellAbdominal bloating
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Non-central nervous system-localized embryonal carcinoma.
View clinical trials →Clinical Trials
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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 Non-central nervous system-localized embryonal carcinoma.
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Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.What stage is the tumor, and has it spread to other parts of the body?,What are my tumor marker levels, and what do they mean for my prognosis?,What treatment plan do you recommend, and what are the expected side effects?,Should I consider fertility preservation before starting treatment?,How often will I need follow-up tests after treatment, and for how long?,Are there any clinical trials available that might be appropriate for my situation?,What are the signs of recurrence that I should watch for after treatment?
Common questions about Non-central nervous system-localized embryonal carcinoma
What is Non-central nervous system-localized embryonal carcinoma?
Non-central nervous system-localized embryonal carcinoma is a rare type of cancer that belongs to the group of germ cell tumors. Germ cells are the cells that normally develop into eggs or sperm, but sometimes these cells can form tumors in various parts of the body outside the brain and spinal cord. When this type of embryonal carcinoma occurs in the liver, it is classified under ICD-10 code C22.7. Embryonal carcinoma is one of the most aggressive forms of germ cell tumors and can occur in the testicles, ovaries, or other locations in the body such as the chest (mediastinum), abdomen, or live
How is Non-central nervous system-localized embryonal carcinoma inherited?
Non-central nervous system-localized embryonal carcinoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Non-central nervous system-localized embryonal carcinoma?
2 specialists and care centers treating Non-central nervous system-localized embryonal carcinoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.