Living with Rhabdomyosarcoma
A rare, fast-growing cancer of skeletal muscle tissue that mostly affects children and young adults.
Understanding Rhabdomyosarcoma
It usually occurs in children and young adults. Only a small share of tumors begin in the muscles of the arms and legs. Most start in other parts of the body.
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 Sarcoma Foundation of America 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, Sarcoma Foundation of America
- 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 doesn't describe a cause for this condition yet.
Also known as: malignant soft tissue tumor of skeletal muscle differentiation; rhabdomyosarcoma (disease); rhabdomyosarcoma, malignant; rhabdosarcoma
Patient organizations
- Alex's Lemonade Stand FoundationRhabdomyosarcoma · United States
- Sarcoma Foundation of AmericaRhabdomyosarcoma · United States
- Summer's Way FoundationRhabdomyosarcoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Rhabdomyosarcoma.
Explore research for Rhabdomyosarcoma
Explore actively recruiting Rhabdomyosarcoma studies with HealthSpark.
Find actively recruiting studies for Rhabdomyosarcoma 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
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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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