ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with a desmoid tumor each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor are the same. Use the menu to see other pages.
Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided at the bottom of this page.
How many people are diagnosed with a desmoid tumor?
Desmoid tumors are rare. 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 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.
What is the survival rate for a desmoid tumor?
There are different types of statistics that can help doctors evaluate a person’s chance of recovery from a desmoid tumor. These are called survival statistics.
It is important to remember that statistics on the survival rates for people with a desmoid tumor are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.
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 99% of patients were alive 5 years after their diagnosis.
The survival rates for desmoid tumor vary based on several factors. These include the stage of tumor, a person’s age and general health, and how well the treatment plan works. Other factors that can affect outcomes include where the tumor is located and how quickly the tumor grows. 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%.
Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.
Statistics adapted from the websites of 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 February 2023.)
The next section in this guide is Risk Factors. It describes 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.