Living with Polyembryoma
A rare tumor of the testes or ovaries made of parts shaped like early embryos, seen in teens and adults.
Understanding Polyembryoma
It has a distinctive look because it is made of many parts shaped like embryos, one of the earliest stages of a developing human. It tends to appear from the teen years into adulthood. It may cause a lump in the abdomen, which can be painful, puberty at an unusually young age, or irregular periods.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Unusual lump or mass in the abdomen
- Abdominal pain
- Puberty at an unusually young age
- Irregular menstrual periods
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 says the cause is not yet known.
Also known as: embryonal carcinoma - polyembryonal type; embryonal carcinoma, polyembryonal type
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Polyembryoma.
Explore research for Polyembryoma
Explore actively recruiting Polyembryoma studies with HealthSpark.
Find actively recruiting studies for Polyembryoma 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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