Disease Information

Solid Tumor: Desmoid Tumors

Alternate Names: Aggressive fibromatosis; deep fibromatosis; desmoid fibromatosis; fibromatosis, infantile; fibromatosis, juvenile; grade I fibrosarcoma; musculoaponeurotic fibromatosis; nonmetastasizing fibrosarcoma

What is a desmoid tumor?

A desmoid tumor is a growth that resembles scar tissue. However, 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 is not usually considered cancerous.

Desmoid tumors are usually named for the areas where they grow:

How common are desmoid tumors?

Desmoid tumors account for 0.03 percent of all cancerous tumors. They occur most often in people with a family history of colorectal cancer, especially in those with a rare, inherited condition called familial adenomatous polyposis:

Desmoid tumors in children are most commonly diagnosed between ages 15 and 16. Race and ethnic background do not seem to affect whether a person gets these tumors.

What are the symptoms of desmoid tumors?

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 vary depending on tumor size and location. Common symptoms include the following:

How are desmoid tumors treated?

If your child has a desmoid tumor, treatment will depend on the patient’s:

Desmoid tumor treatment may include surgery, radiation therapy, chemotherapy and antihormonal therapy as well as medicines called nonsteroidal anti-inflammatory drugs (NSAIDs):

Radiation therapy may be used alone or in addition to surgery.

Chemo may be used for desmoid tumors that cannot be removed safely because they are too close to blood vessels or other important structures.

What are the survival rates for desmoid tumors?

Up to 30 percent of these tumors come back within 10 years after surgery. Fortunately, they are rarely fatal.

Why choose St. Jude for your child’s desmoid tumor treatment?


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