Living with Desmoid tumor
A noncancerous but sometimes aggressive growth of connective tissue that can invade nearby tissue and return after removal.
Understanding Desmoid tumor
Most people develop a single tumor. They most often appear in the 30s or 40s but can occur from adolescence to late adulthood. Desmoid tumors are generally noncancerous because they do not spread, but they can invade nearby tissue, be hard to remove, and come back.
Signs & symptoms
Symptoms vary by where the tumor is. GARD lists these among the most common:
- A firm lump under the skin
- Abdominal pain
- Changes in the abdominal wall
- Poor absorption of nutrients (malabsorption)
- Growths in the intestine (polyposis)
- Fibrous tumors (fibromas)
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
Children's Tumor Foundation and Desmoid Tumor Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Expert lists: Children's Tumor Foundation, Desmoid Tumor Research Foundation
- 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 Children's Tumor 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 name a gene. It lists autosomal dominant inheritance, so a changed copy of the gene from one parent can be enough.
Also known as: aggressive fibromatosis; deep fibromatosis; deep fibromatosis/desmoid tumor; deep fibromatosis/desmoid tumour; desmoid; desmoid fibromatosis
Patient organizations
- Children's Tumor FoundationDesmoid tumor · United States
- Desmoid Tumor Research FoundationDesmoid tumor · United States
You are more than your diagnosis
Perspectives from people navigating life with Desmoid tumor.
Explore research for Desmoid tumor
Explore actively recruiting Desmoid tumor studies with HealthSpark.
Find actively recruiting studies for Desmoid tumor 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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