Key Statistics for Gastrointestinal Stromal Tumors

Learn about key statistics for gastrointestinal stromal tumors (GIST), including how common they are, who is most affected, and the outlook for those with a diagnosis.

How common are gastrointestinal stromal tumors?

GISTs are rare and were not recognized as their own unique type of tumor until the late 1990s.

About 6,000 cases of GIST are diagnosed each year in the United States.

These tumors can start anywhere in the GI tract, but they occur most often in the stomach (about 60%) or the small intestine (about 35%). Most of the rest are found in the esophagus, colon, and rectum. A small number grow in the abdomen outside the GI tract.

Who is most affected?

GISTs are equally common in men and women. They are most often found in people over the age of 50. These tumors are rare in people younger than 40, but they can develop in people of any age.

Some people have gene changes that run in their family, which increase the risk of GISTs. For example, heritable changes in the KIT or PDGFRA genes cause familial GIST syndrome. When GISTs occur in children or young adults, it may be because of a disease like familial GIST syndrome.

Other gene changes, like those in SDH or NF1 genes, can also increase the risk of GIST tumors.

Survival statistics for people with GIST tumors are discussed in Survival Rates for Gastrointestinal Stromal Tumors.