Living with Embryonal rhabdomyosarcoma
A rare cancer that starts from very early muscle cells.
Understanding Embryonal rhabdomyosarcoma
Under a microscope, the tumor does not have clear borders and shows muscle cells at different early stages of development. It is a type of rhabdomyosarcoma.
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: botryoid rhabdomyosarcoma (type of erms); embryonal rhabdomyosarcoma (disease); erms; rhabdomyosarcoma, embryonal, type 1; rhabdomyosarcoma, somatic; spindle cell rhabdomyosarcomas (type of erms)
Patient organizations
- Alex's Lemonade Stand FoundationEmbryonal rhabdomyosarcoma · United States
- Sarcoma Foundation of AmericaEmbryonal rhabdomyosarcoma · United States
- Summer's Way FoundationEmbryonal rhabdomyosarcoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Embryonal rhabdomyosarcoma.
Explore research for Embryonal rhabdomyosarcoma
Explore actively recruiting Embryonal rhabdomyosarcoma studies with HealthSpark.
Find actively recruiting studies for Embryonal 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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