Overview
Primary non-gestational choriocarcinoma of the ovary is an extremely rare type of ovarian cancer. Unlike the more common gestational choriocarcinoma, which develops from tissue related to a pregnancy (such as a molar pregnancy or after a miscarriage), this form arises directly from the ovary's own germ cells without any connection to pregnancy. It is sometimes called pure non-gestational ovarian choriocarcinoma. The tumor produces high levels of a hormone called human chorionic gonadotropin (hCG), which is the same hormone measured in pregnancy tests. This can cause a positive pregnancy test even though the patient is not pregnant, which can sometimes delay the correct diagnosis. This cancer tends to grow quickly and can spread (metastasize) to other parts of the body, including the lungs, liver, and brain. Symptoms often include abdominal or pelvic pain, a mass or swelling in the lower belly, irregular vaginal bleeding, and sometimes symptoms related to high hCG levels such as breast tenderness. Because it is so rare, it is often diagnosed after surgery when tissue is examined under a microscope. Treatment typically involves a combination of surgery to remove the tumor and chemotherapy. The chemotherapy regimens used are often similar to those used for gestational choriocarcinoma, such as EMA-CO (etoposide, methotrexate, actinomycin D, cyclophosphamide, and vincristine) or BEP (bleomycin, etoposide, and cisplatin). However, non-gestational choriocarcinoma tends to respond less well to chemotherapy compared to its gestational counterpart, making it a more challenging cancer to treat. Early diagnosis and aggressive treatment are important for the best possible outcomes.
Also known as:
Key symptoms:
Abdominal or pelvic painSwelling or a mass in the lower bellyIrregular or abnormal vaginal bleedingPositive pregnancy test when not pregnantNausea or vomitingBreast tenderness or swellingUnexplained weight lossFatigue and feeling very tiredShortness of breath if cancer has spread to the lungsBloating or feeling of fullnessEarly puberty signs in young girls (precocious puberty)
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 Primary non-gestational choriocarcinoma of ovary.
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Specialists
View all specialists →No specialists are currently listed for Primary non-gestational choriocarcinoma of ovary.
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 Primary non-gestational choriocarcinoma of ovary.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.How do you know this is a non-gestational choriocarcinoma rather than a gestational one, and why does the distinction matter?,What stage is the cancer, and has it spread beyond the ovary?,Is fertility-sparing surgery an option in my case?,What chemotherapy regimen do you recommend, and what side effects should I expect?,How will you monitor whether the treatment is working?,What are the chances of the cancer coming back, and how will recurrence be detected?,Are there any clinical trials or newer treatments I should consider?
Common questions about Primary non-gestational choriocarcinoma of ovary
What is Primary non-gestational choriocarcinoma of ovary?
Primary non-gestational choriocarcinoma of the ovary is an extremely rare type of ovarian cancer. Unlike the more common gestational choriocarcinoma, which develops from tissue related to a pregnancy (such as a molar pregnancy or after a miscarriage), this form arises directly from the ovary's own germ cells without any connection to pregnancy. It is sometimes called pure non-gestational ovarian choriocarcinoma. The tumor produces high levels of a hormone called human chorionic gonadotropin (hCG), which is the same hormone measured in pregnancy tests. This can cause a positive pregnancy test e
How is Primary non-gestational choriocarcinoma of ovary inherited?
Primary non-gestational choriocarcinoma of ovary follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.