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Also called: Aggressive fibromatosis; deep fibromatosis; desmoid fibromatosis; fibromatosis, infantile; fibromatosis, juvenile; grade I fibrosarcoma; musculoaponeurotic fibromatosis; nonmetastasizing fibrosarcoma
A desmoid tumor is a type of soft-tissue growth that resembles scar tissue. It occurs inside the body and may be found anywhere within the connective tissues. Connective tissues provide strength and flexibility to bones, ligaments, and muscles. A desmoid tumor does not spread to other parts of the body. But it can grow slowly or quickly and may press on nearby tissues or organs.
Desmoid tumors are usually named for the areas where they grow:
Desmoid tumors develop in tissue such as tendons and ligaments. These tissues are flexible and easy for tumors to push aside as they grow. So, these tumors are often present for a long time before they are found.
Symptoms of desmoid tumors vary depending on tumor size and location. Common symptoms include:
Desmoid tumors are rare. Desmoid tumors in children are most often diagnosed between ages 5–15. Race and ethnic background do not seem to affect whether a person gets these tumors.
Desmoid tumors occur most often in people with a family history of colorectal cancer. They are especially likely in those with a rare, inherited condition called familial adenomatous polyposis.
Doctors use several types of tests to diagnose desmoid tumor. These may include:
Treatment of desmoid tumors depends on factors such as your child’s age, medical history, overall health, and how well they can withstand and treatment. Your care team will also consider tumor size and expected growth.
Treatment for desmoid tumors may include:
Desmoid tumors are rarely fatal. But they can come back after treatment.
Up to 30% of these tumors come back within 10 years after surgery.
Study goal:
The main purpose of this study is to find out how well the medicine tegavivint works to help children, teens, and young adults with certain recurrent or refractory solid tumors.
Age:
12 months to 30 years
St. Jude provides the highest quality of care for patients with desmoid tumors:
Patients accepted to St. Jude must have a disease we treat and must be referred by a physician or other qualified medical professional. We accept most patients based on their ability to enroll in an open clinical trial.
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