Living with Atypical teratoid rhabdoid tumor
A fast-growing cancerous brain and spinal cord tumor, mostly in children.
Understanding Atypical teratoid rhabdoid tumor
Most cases happen in childhood. Changes in the SMARCB1 gene, or very rarely the SMARCA4 gene, are present in the tumor. Signs depend on where the tumor is.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Lethargy and irritability
- Nausea and vomiting
- Headache
- Weakness on one side of the body
- Seizures
- Extra fluid in the brain (hydrocephalus) or a large head
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 brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 changes in the SMARCB1 gene, or very rarely the SMARCA4 gene, are present in this tumor.
Also known as: at/rt; atrt; att/rht; atypical teratoid/rhabdoid tumor; atypical teratoid/rhabdoid tumor (morphologic abnormality); atypical teratoid/rhabdoid tumor (who grade iv)
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 Atypical teratoid rhabdoid tumor.
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