Desmoid tumors are rare tumors accounting for 3% of all soft-tissue tumor growths. Approximately 900 to 1500 people in the United States are diagnosed with desmoid tumors every year. It has affected people between the ages of 15 and 60 years. The disease condition is more common in women than men (2:1 ratio). There is no specific racial or ethnic distribution for desmoid tumors. Children between the ages of 15 and 16 develop desmoid tumors. Since these tumors are rare, it is challenging to predict their accurate survival rates. Still, reports show that 98% of people who have sought treatment are alive even after five years post initial diagnosis of desmoid tumor. The recurrence rate of desmoid tumors post-surgery is estimated at approximately 20% to as high as 80%.
Statistics of Desmoid Tumors
Based on the statistics of desmoid tumors, they are rare tumors that account for only 3% of all soft-tissue tumor growths. Approximately 900 to 1500 people in the United States are diagnosed with desmoid tumors every year. That is, out of a million people, only around five to six people are diagnosed with these tumors every year. But experts believe that, since the disease condition is rare and its diagnosis is challenging, many cases of desmoid tumors lie undiagnosed and untreated. This even affects the statistics of the desmoid tumors condition.
Desmoid tumors are mostly seen to affect people between the ages of 15 and 60 years. But this tumor condition can occur in people of any age, and it can even affect small children. The disease condition is more common in women than men (2:1 ratio). There is no specific racial or ethnic distribution for desmoid tumors 1. Children between the ages of 15 and 16 are seen to develop desmoid tumors. Both boys and girls are equally susceptible to developing this tumor.
Death due to desmoid tumors is very rare. However, the disease can be very painful, and it can grow and spread to nearby tissues, structures and organs, thereby affecting a person’s comfort and quality of life. Since these tumors are rare, it is challenging to predict their accurate survival rates, but reports show that 98% of people who have sought treatment are alive even after five years post initial diagnosis 2. The survival rate of people diagnosed with desmoid tumors depends on various factors like the tumor location, size, rate of growth, and the extent to which it can be treated and cured. Most desmoid tumors are not life-threatening; however, desmoid tumors in the head and neck region and intra-abdominal desmoid tumors can pose a threat to survival. Intra-abdominal tumors can cause grave complications like intestinal obstruction.
Desmoid tumors are known to recur back in the body. They can come back, at or near the initial tumor site, post-treatment. The recurrence rate of desmoid tumors post-surgery is estimated at approximately around 20% to as high as 80% 3.
People should note that the figures mentioned with respect to desmoid tumors in the article are estimates, which can vary with time. Much of these estimates are based on the number of people diagnosed with desmoid tumors every year in the US. Patients are encouraged to talk with their doctor or healthcare team to get accurate, up-to-date information regarding desmoid tumors. Patients can also ask any questions or doubts regarding the disease.
- 1.Bertario L, Russo A, Sala P, et al. Multiple Approach to the Exploration of Genotype-Phenotype Correlations in Familial Adenomatous Polyposis. JCO. Published online May 1, 2003:1698-1707. doi:10.1200/jco.2003.09.118
- 2.Micke O, Seegenschmiedt MH. Radiation therapy for aggressive fibromatosis (desmoid tumors): Results of a national Patterns of Care Study. International Journal of Radiation Oncology*Biology*Physics. Published online March 2005:882-891. doi:10.1016/j.ijrobp.2004.07.705
- 3.Pignatti G, Barbanti-Bròdano G, Ferrari D, et al. Extraabdominal desmoid tumor. A study of 83 cases. Clin Orthop Relat Res. 2000;(375):207-213. https://www.ncbi.nlm.nih.gov/pubmed/10853171