Gastrointestinal stromal tumors (GISTs) are growths that form in the digestive tract. The overall GIST survival rate for 5 years is 85%. However, this rate cannot predict the survival of any particular person because it depends on various factors, such as their overall health and age.

The American Cancer Society (ACS) is the source of the above information.

While GISTs are usually not cancerous, sometimes they are. Those that are cancerous comprise 0.1 to 3% of gastrointestinal cancerous tumors. Some factors affecting survival include whether it is possible to surgically remove the cancer and how well it responds to treatment.

This article discusses the GIST survival rate and influencing factors. It also offers recommendations for people living with GIST cancer and answers frequently asked questions.

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The National Cancer Institute (NCI) maintains the Surveillance, Epidemiology, and End Results (SEER), which offers 5-year relative survival rates for GISTs. The relative survival rate compares the expected percentage of people with a specific cancer who will live a specified length of time — in this case, 5 years — to those in the general population.

The rates depend solely on the extent of tumor spread at the time of diagnosis and do not reflect other factors that influence survival. The table below shows the SEER survival rates for GISTs based on their stage:

StageDefinition5-year survival rate
localizedThis means the cancer has not spread beyond the organ in which it started, such as the stomach or small intestine.95%
regionalThis denotes cancer that has spread into nearby lymph nodes or structures.84%
distantThis refers to cancer that has spread to distant parts of the body.52%
all SEER stages This is a combination of the above three stages.85%

Learn more about GIST.

This can include:

AJCC stages

The American Joint Committee on Cancer (AJCC) provides an alternative staging system to SEER staging. It ranges from stage 1 to stage 4, with experts classing more serious tumors as stage 4.

Like the SEER system, it depicts how much cancer is in the body. Unlike the SEER system, it considers other factors. In addition to the extent of tumor spread, the AJCC stages also consider the tumor’s size and the mitotic rate. The mitotic rate refers to the rate at which the tumor cells duplicate.

Aggressiveness

Generally, the more aggressive a tumor is, the faster it grows and spreads. A factor that affects aggressiveness is the location of a tumor.

A greater proportion of intestinal tumors tend to be more aggressive than stomach tumors.

Miscellaneous factors

Research notes that other factors influence outlook. These include recurrence, tumor rupture, and the presence of negative margins at the point of removal. Negative margins mean that no cancer cells are present at the edge of the tumor.

Additional factors that affect a person’s survival can include:

  • their general health
  • their age
  • their response to treatment
  • whether it is possible to remove the tumor surgically

Recurrence of GIST cancer is possible, so an individual should keep all follow-up appointments that permit a doctor to monitor them closely. A doctor can make someone a survivorship care plan, which involves:

  • a schedule of exams and tests
  • treatment side effects to watch for and report
  • physical activity and dietary recommendations

Learn more about coping with a cancer diagnosis.

Clinical trials

Additionally, a person may be interested in trying a new treatment that the Food and Drug Administration (FDA) has not yet approved. The most common way to new, non-approved medications is to participate in a clinical trial.

The NCI offers a toll-free number to obtain information about clinical trials for people with GISTs. It is 1-800-4-CANCER (1-800-422-6237).

Below are answers to some frequently asked questions on the topic:

How long do GIST patients live?

As aforementioned, the length of survival depends on an array of factors, but the overall survival is around 5 years, reports a 2020 study.

Is GIST curable?

There may be some people with curable cases of GIST, such as those involving a small tumor that a surgeon can safely remove entirely.

However, it is important to remember that even small cancers may recur, so follow-up monitoring is essential.

Is a GIST aggressive?

A GIST is clinically aggressive in 40–50% of intestinal tumors and 20–25% of stomach tumors.

Is GIST hereditary?

The risk of GIST is higher in people who inherited a change or mutation in a particular gene. That said, this does not mean that a person with the mutation will definitely develop GIST.

The SEER gastrointestinal stromal tumor survival rate for 5 years varies, depending on how far the tumor has spread when a person first receives a diagnosis. While the overall SEER rate is 85%, survival depends on other factors, such as the tumor’s size, location, and the person’s age and general health.

A doctor can make people living with GIST cancer a survivorship care plan that includes a schedule for follow-up tests and a list of side effects to watch for and report. They also may consider enrolling in a clinical trial.