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Desmoid Tumors Treatment

Also called: Aggressive fibromatosis; deep fibromatosis; desmoid fibromatosis; fibromatosis, infantile; fibromatosis, juvenile; grade I fibrosarcoma; musculoaponeurotic fibromatosis; nonmetastasizing fibrosarcoma

A desmoid tumor is a 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 is usually not cancerous (benign).

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

  • Abdominal desmoid tumors grow in the walls of the abdomen (belly)
  • Intra-abdominal desmoid tumors grow in tissue connecting abdominal organs.
  • Extra-abdominal desmoid tumors grow anywhere else in the body.

Desmoid tumors symptoms

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:

  • A painless swelling or lump
  • Pain or soreness caused by the tumor pressing on nerves or muscles
  • Limping (leg tumors)
  • Abdominal (belly) pain
  • Constipation, and other problems if the bowel is blocked
  • Tingling or the feeling that an area of the body has “gone to sleep” if the tumor presses on a blood vessel or nerve

Causes of desmoid tumors

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.

  • In familial adenomatous polyposis, polyps (extra tissue) form in the large intestine and in the upper portion of the small intestine.
  • Desmoid tumors occur in up to 20% (one in 5) people with familial adenomatous polyposis of the colon.

Diagnosis of desmoid tumors

Doctors use several types of tests to diagnose desmoid tumor. These may include:

  • A physical exam and health history
  • Imaging tests to learn about the size and location of the tumor
  • Biopsy of tumor

Desmoid tumors treatment

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:

  • Surgery is the most common way to treat these tumors. Desmoid tumors rarely spread (metastasize), so surgery is often the only treatment needed. However, if the tumor is not completely removed or returns, more surgery may be required.
  • Radiation therapy uses high-energy x-rays or other types of radiation to kill cancer cells or stop them from growing.
  • Chemotherapy (“chemo”) uses powerful medicines to kill cancer cells or stop them from growing (dividing) and making more cancer cells. Chemo may be used for desmoid tumors that cannot be removed safely because they are too close to blood vessels or other important structures.
  • Antihormonal therapy uses medicines that help block the growth of some kinds of desmoid tumors due to the actions of certain hormones (chemicals in the blood).
  • Nonsteroidal anti-inflammatory drugs (NSAIDs) may be prescribed to help manage pain and swelling related to desmoid tumors.

Prognosis for desmoid tumors

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.

Desmoid tumors clinical trials

PEPN2011: Tegavivint Treatment for Solid Tumors, Lymphomas, and Desmoid Tumors

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.


12 months to 30 years

Desmoid tumor care at St. Jude

St. Jude provides the highest quality of care for patients with desmoid tumors:

  • The expert skills and experience of St. Jude specialty surgeons can help improve patients’ chances for best outcomes.
  • The medical team works closely with researchers to bring new treatments from the lab to the clinic.
  • We are consistently ranked among the best childhood cancer centers in the nation by US News & World Report. 
  • At St. Jude, we have created an environment where children can be children and families can be together.  
  • We lead more clinical trials for childhood cancer than any other hospital in the U.S.  
  • St. Jude is the only National Cancer Institute–designated Comprehensive Cancer Center just for children. A Comprehensive Cancer Center meets rigorous standards for research that develops new and better approaches to prevent, diagnose, and treat cancer. 
  • The nurse-to-patient ratio at St. Jude is about 1:3 in hematology and oncology and 1:1 in the Intensive Care Unit. 
  • Patients may be able to get expert, compassionate care and treatment closer to their homes through the St. Jude Affiliate Program. 
A statue of children running and holding hands

Seeking treatment at St. Jude

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.

How to seek treatment

Contact the Physician / Patient Referral Office

Call: 1-888-226-4343 (toll-free) or 901-595-4055 (local)  | Fax: 901-595-4011 | Email: | 24-hour pager: 1-800-349-4334


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