ON THIS PAGE: You will find information about the number of people who are diagnosed with a desmoid tumor each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.
Desmoid tumors are rare, making up less than 3% of all soft-tissue tumors. Each year, approximately 900 to 1,500 people in the United States will be diagnosed with a desmoid tumor. This type of tumor mostly affects people between the ages of 15 and 60 years, but it can occur at any age. Desmoid tumors are slightly more common in women than in men.
In children, desmoid tumors most often occur between the ages of 15 and 16 years. Boys and girls are equally as likely to develop this type of tumor.
Desmoid tumors rarely cause death. However, they can be painful and grow into nearby tissue, organs, and structures, reducing a person’s quality of life. Because desmoid tumors are so rare, it is hard to determine accurate survival rates, but 1 report found that more than 98% of patients were alive 5 years after their diagnosis. The survival rate for people with a desmoid tumor depends on several factors, including where the tumor is located, how quickly the tumor grows, and whether it can be controlled with treatment. Intra-abdominal desmoid tumors are the most likely to cause potentially life-threatening complications, such as intestinal obstruction. Desmoid tumors in the head and neck region can also be life threatening.
Desmoid tumors often recur, or come back, at or near the original tumor site after surgery. Reported recurrence rates after surgery vary widely, from approximately 20% to as high as 80%.
It is important to remember that statistics for people with a desmoid tumor are an estimate. The estimate comes from data based on the number of people with these tumors in the United States. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.
Statistics adapted from the National Cancer Institute, National Institutes of Health, National Organization for Rare Disorders, St. Jude Children’s Research Hospital, and The Desmoid Tumor Research Foundation. Additional sources were Meazza C, et al.: Aggressive Fibromatosis in Children and Adolescents: The Italian Experience. Cancer. 2010 Jan 1;116(1):233–240. doi: 10.1002/cncr.24679 and Koskenvuo L, et al.: Comparison of Sporadic and FAP-associated Desmoid-Type Fibromatoses. J Surg Oncol. 2017 Nov;116(6):716–721. doi: 10.1002/jso.24699. (All sources accessed January 2021.)
The next section in this guide is Risk Factors. It explains the factors that may increase the chance of developing a desmoid tumor. Use the menu to choose a different section to read in this guide.