Living with Childhood germ cell brain tumor
A tumor made of germ cells that forms in the brain or spinal cord, most often in people aged 10 to 19.
Understanding Childhood germ cell brain tumor
Germ cells are reproductive cells in a fetus. Sometimes they travel to other places and later become tumors. CNS germ cell tumors occur most often in people aged 10 to 19 and are more common in males. In older children they usually form near the pineal gland or near the pituitary gland. The type depends on how the cells look under a microscope and on tumor marker tests.
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
The cause of most childhood CNS germ cell tumors is not known.
Also known as: brain germ cell tumor; brain germ cell tumour; childhood brain germ cell neoplasm; childhood brain germ cell tumor; childhood brain germ cell tumour; childhood germ cell brain neoplasm
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 Childhood germ cell brain tumor.
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