Living with Anaplastic ependymoma
A fast-growing type of ependymoma, a tumor of the brain or spinal cord.
Understanding Anaplastic ependymoma
An ependymoma is called anaplastic when the cells grow very quickly and look quite unusual in shape. Ependymomas can occur at any age. In children they are more often in the brain, and in adults they are more often in the spinal cord. Diagnosis is usually suspected from an MRI or CT scan and confirmed by a biopsy or when the tumor is removed.
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 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.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation and Collaborative Ependymoma Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation, Collaborative Ependymoma Research Network
- 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 Alex's Lemonade Stand Foundation 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 exact cause isn't known. It is thought that acquired (somatic) changes in certain genes in some cells let those cells grow quickly.
Also known as: anaplastic ependymal neoplasm; anaplastic ependymal tumor; anaplastic ependymal tumour; ependymoma, anaplastic; ependymoma, anaplastic, malignant; ependymoma, malignant
Patient organizations
- Alex's Lemonade Stand FoundationAnaplastic ependymoma · United States
- Collaborative Ependymoma Research NetworkAnaplastic ependymoma · United States
- Pediatric Brain Tumor FoundationAnaplastic ependymoma · United States
- The Childhood Brain Tumor FoundationAnaplastic ependymoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Anaplastic ependymoma.
Explore research for Anaplastic ependymoma
Explore actively recruiting Anaplastic ependymoma studies with HealthSpark.
Find actively recruiting studies for Anaplastic ependymoma 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Anaplastic ependymoma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Anaplastic ependymoma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Anaplastic ependymoma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.