Desmoid Tumor

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Desmoid Tumor is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Desmoid tumor commonly develops in the fibrous (connective) tissue of the body that forms tendons and ligaments, usually in the arms, legs or midsection, and also in the head and neck. These tissues of the body connect, support, and surround other body parts and organs. The myofibroblast is the cell considered to be responsible for the development of desmoid tumor. Regardless of its scientific classification, a desmoid tumor can be invasive to surrounding tissues and difficult to control. Desmoid tumors can develop virtually at any body site. Superficial desmoids tend to be less aggressive than deep desmoids (abdominal, extra abdominal, mesenteric). These tumors look like dense scar tissue and just like scar tissue, they adhere tenaciously to surrounding structures and organs, and, thus they are commonly difficult to remove. Surgery has been the traditional main mode of therapy for desmoid tumors but up to 20-50% of these tumors recur after surgery.
The Greek word "desmos" which means tendon or band like has been the origin of the term desmoid and was coined by Muller in 1838. Desmoid tumor is called an aggressive fibromatosis as it has similarities with a malignant (cancerous) tumor called fibrosarcoma. However, it is considered benign because it does not metastasize (spread) to other parts of the body.

Supporting Organizations

American Cancer Society, Inc.

250 Williams NW St
Ste 6000
Atlanta, GA 30303
Tel: (404)320-3333
Tel: (800)227-2345

Desmoid Tumor Research Foundation

P.O. Box 273
Suffern, NY 10901
Tel: (914)262-6595
Fax: (845)369-8302

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

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Last Updated:  5/26/2015
Copyright  2015 National Organization for Rare Disorders, Inc.