Living with Extragonadal germ cell tumor
A tumor from germ cells that starts somewhere other than the testis or ovary, such as the chest or brain.
Understanding Extragonadal germ cell tumor
Sites listed by GARD include the central nervous system, the lung, the mediastinum (the area in the middle of the chest), and the retroperitoneum (the area behind the belly organs).
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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 doesn't describe a cause for this condition yet.
Also known as: extragonadal germ cell neoplasm; extragonadal germ cell neoplasms; neoplasm of extragonadal germ cell; neoplasm of the extragonadal germ cell; primary extragonadal germ cell tumor; primary extragonadal germ cell tumour
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 Extragonadal germ cell tumor.
Explore research for Extragonadal germ cell tumor
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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