Living with Alveolar soft part sarcoma
A rare, slow-growing soft tissue cancer that often shows up as a painless lump in the legs of adults or the head and neck of children.
Understanding Alveolar soft part sarcoma
It most often grows on the lower limbs in adults and in the head and neck in children, though it can occur in other places. It usually appears as a soft, painless lump, often with no other signs. Many cases aren't diagnosed until symptoms appear from spread to other sites, such as the lungs, bones, central nervous system, or liver. It can start at any time in life.
Signs & symptoms
Symptoms vary. GARD's summary says it generally shows up as:
- A soft, painless lump
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 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
- 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 underlying cause is poorly understood. Most cases occur sporadically (by chance), in people with no family history.
Also known as: adult alveolar soft part sarcoma; adult alveolar soft-part sarcoma; alveolar soft part sarcoma (disease); alveolar soft tissue sarcoma; alveolar soft-part sarcoma; asps
Patient organizations
- Alex's Lemonade Stand FoundationAlveolar soft part sarcoma · United States
- Sarcoma AllianceAlveolar soft part sarcoma · United States
- Sarcoma Foundation of AmericaAlveolar soft part sarcoma · United States
- American Cancer SocietyAlveolar soft part sarcoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Alveolar soft part sarcoma.
Explore research for Alveolar soft part sarcoma
Explore actively recruiting Alveolar soft part sarcoma studies with HealthSpark.
Find actively recruiting studies for Alveolar soft part 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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