Living with Desmoplastic small round cell tumor
A rare soft tissue cancer that usually starts in the abdomen and mainly affects children and young adults.
Understanding Desmoplastic small round cell tumor
It mainly affects children and young adults and is more common in males. It is often found in the peritoneum, the lining of the abdomen and pelvis. The tumor cells have a genetic change between chromosomes 11 and 22, which is acquired during life and is not inherited.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Abdominal pain
- Swollen belly or fullness
- Nausea and vomiting
- Enlarged liver
- Swollen lymph nodes
- Blocked bowel movement (ileus)
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
The tumor cells have a genetic change involving chromosomes 11 and 22. GARD says this change is acquired during a person's life and is not inherited.
Also known as: desmoplas. small round cell tumor; desmoplas. small round cell tumour; desmoplastic small round cell tumour; desmoplastic small round-cell neoplasm; desmoplastic small round-cell tumor; desmoplastic small round-cell tumour
Patient organizations
- Alex's Lemonade Stand FoundationDesmoplastic small round cell tumor · United States
- Sarcoma AllianceDesmoplastic small round cell tumor · United States
- Sarcoma Foundation of AmericaDesmoplastic small round cell tumor · United States
- American Cancer SocietyDesmoplastic small round cell tumor · United States
You are more than your diagnosis
Perspectives from people navigating life with Desmoplastic small round cell tumor.
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