Living with Ewing sarcoma
A cancer of bone or soft tissue that mostly affects children and young adults.
Understanding Ewing sarcoma
There are several related types, including Ewing sarcoma of bone, extraosseous Ewing sarcoma, peripheral primitive neuroectodermal tumor (pPNET), and Askin tumor. It most often affects children and young adults. Ewing sarcoma often spreads to other parts of the body, usually the lungs, other bones, or bone marrow.
Signs & symptoms
Symptoms vary from person to person. GARD's summary describes:
- Bone or tissue pain
- Stiffness, swelling, or tenderness
- A warm, soft lump near the skin
- Fever that does not go away
- A bone that breaks for no clear reason
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 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, Sarcoma Alliance and Sarcoma Foundation of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Cancer specialists (oncologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation, Sarcoma Alliance, 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 says the types are related because they have similar genetic causes. It does not describe a specific cause.
Also known as: es; ewing tumor; ewing's family localised tumour; ewing's family localized tumor; ewing's sarcoma; ewing's tumor
Patient organizations
- Alex's Lemonade Stand FoundationEwing sarcoma · United States
- Sarcoma AllianceEwing sarcoma · United States
- Sarcoma Foundation of AmericaEwing sarcoma · United States
- American Cancer SocietyEwing sarcoma · United States
- Cancer Hope NetworkEwing sarcoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Ewing sarcoma.
Explore research for Ewing sarcoma
Explore actively recruiting Ewing sarcoma studies with HealthSpark.
Find actively recruiting studies for Ewing sarcoma 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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