Living with Chordoma
A rare, slow-growing cancer that can occur anywhere along the spine, from the skull base to the tailbone.
Understanding Chordoma
Chordomas grow slowly into nearby bone and soft tissue and often come back after treatment. In about 40 percent of cases they spread to other areas, such as the lungs. About half occur at the base of the spine, and a third at the base of the skull. They typically occur between ages 40 and 70, and about 5 percent are found in children. Males are affected about twice as often as females.
Signs & symptoms
Symptoms depend on where the tumor is. GARD says a chordoma may cause:
- Pain, weakness, or numbness in the back, arms, or legs
- Double vision (skull base tumors)
- Headaches (skull base tumors)
- A lump you can feel (tailbone tumors)
- Bladder or bowel problems (tailbone tumors)
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 bone and joint specialists, cancer specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Chordoma Foundation and Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Chordoma Foundation, Pituitary Network Association
- 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 Chordoma 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 lists chordoma as autosomal dominant but doesn't name a specific gene or describe a cause.
Also known as: chordoma (disease); chordoma, malignant; notochordal sarcoma; notochordoma
Patient organizations
- Chordoma FoundationChordoma · United States
- American Cancer SocietyChordoma · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Chordoma.
Explore research for Chordoma
Explore actively recruiting Chordoma studies with HealthSpark.
Find actively recruiting studies for Chordoma 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 Chordoma 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 Chordoma
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 Chordoma 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.