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What are Desmoid Tumors?

Desmoid tumor is a rare soft tissue tumor, affecting 2-4 people per million. 

Desmoid tumors arise from connective tissue - the cells involved with the formation of muscle, fibrous and nerve tissue. Desmoid tumors, also called "aggressive fibromatosis", are locally aggressive, meaning that they can grow into and destroy adjacent normal tissues - even bones. Although they do not metastasize, desmoid tumors can infiltrate and sometimes cause destruction of adjacent vital structures and organs. The disease progression may be devastating and occasionally fatal.


People of all ages, sexes, and races are affected by desmoid tumors. Because we know so little about this disease, treatment of desmoid tumors varies widely and is based on the onset of symptoms, when the tumors cause risk to adjacent structures, or when they create cosmetic concerns. Treatment options include surgery, radiation, chemotherapy and /or medical therapy, but there is currently no cure for desmoid tumors. 


Desmoid tumors are uncommon, with an estimated incidence in the general population of 2-4 per million people per year - representing approximately 900 new tumors annually in the United States. But these numbers are likely to be far greater. Lack of awareness, and the various terminologies used to describe the tumors, have hindered accurate diagnosis as well as reporting procedures and statistics. Even when diagnosed properly, there are still far too many questions surrounding this devastating disease.


Learn more about causes, behavior and the incident rates of desmoid tumors by visiting DTRF's About Desmoid Tumors page.


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