Living with Pilocytic astrocytoma
A slow-growing, often noncancerous tumor of the brain or spinal cord, most common in children and young adults.
Understanding Pilocytic astrocytoma
The tumor may form a cyst and usually does not spread to nearby tissue. It most commonly occurs in children and young adults. It is also seen in people with neurofibromatosis type 1 (NF1), Li-Fraumeni syndrome and tuberous sclerosis. Symptoms depend on the size and location of the tumor.
Signs & symptoms
Symptoms vary depending on the size and location of the tumor. Most come from pressure on the brain:
- Headaches
- Nausea
- Vomiting
- Balance problems
- Vision changes
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 National Brain Tumor Society and other patient organizations
- 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 unknown. It is seen more often in people with neurofibromatosis type 1, Li-Fraumeni syndrome and tuberous sclerosis.
Also known as: astrocytoma, benign; astrocytoma, pilocytic, benign; grade i astrocytic neoplasm; grade i astrocytic tumor; grade i astrocytic tumour; grade i astrocytoma
Patient organizations
- National Brain Tumor SocietyPilocytic astrocytoma · United States
- Pediatric Brain Tumor FoundationPilocytic astrocytoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Pilocytic astrocytoma.
Explore research for Pilocytic astrocytoma
Explore actively recruiting Pilocytic astrocytoma studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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