Gastrointestinal stromal cell tumor (GIST)

A gastrointestinal stromal cell tumor (GIST) is a rare tumor in the gastrointestinal tract. This tumor does not start in the mucosa, as in esophageal, stomach and colon cancer. GIST grows in the connective tissue layer and muscle layer of an organ. GIST belongs to a group of tumors called sarcomas . These are tumors in the soft tissues of the body. GIST is rare. Of all tumors in the gastrointestinal tract, 2% is a GIST. Yet GIST is the most common sarcoma.

On this page you can read more about the symptoms, examinations and treatment of gastrointestinal stromal cell tumors (GIST).

Read more about GIST

Causes of GIST

GIST is caused by a change in the genetic makeup of a cell. That cell is located in the muscle layer of the gastrointestinal tract. This change causes the cell to divide quickly and uncontrollably. This creates a tumor: GIST. Yeasts can occur throughout the gastrointestinal tract. They usually occur in the stomach.

  • stomach: 50-60%
  • Small intestine: 20-30%
  • rectum: 10%
  • colon: 5%
  • Esophagus: 5%

Every year, about 1.5 out of every 100,000 people get GIST. In the Netherlands, that is about 250 people a year.

In most people, GIST develops without a clear cause. There are no known risk factors. In a small group of patients, about 5%, GIST is caused by an underlying genetic disorder.

Symptoms of GIST

A smaller tumor (smaller than 2 cm) often does not cause any symptoms. This is usually found by chance during an examination for another reason. Larger tumors can cause specific symptoms. The symptoms are usually due to the size of the tumor or to bleeding.

Complaints due to the size of the tumor may include:

  • bellyache
  • nausea
  • problems with bowel movements
  • difficulty eating
  • a swelling in the abdomen

If there is bleeding, you may see blood in your stool or vomit. Sometimes you notice it in symptoms of anemia, such as fatigue.

Examination and diagnosis of sarcomas

To diagnose sarcomas, the following tests are performed:

Gastrointestinal stromal tumor treatment

The prognosis of a GIST depends on the size of the tumor, where the tumor is located in the gastrointestinal tract and the aggressiveness of the GIST. The aggressiveness of the GIST is determined, among other things, by the number of cell divisions in the tumor. Tumors in the stomach usually grow less quickly than tumors in the small intestine. Which treatment you receive depends on the characteristics of the tumor. Your condition and health also play a role. Your doctor will tell you in advance what is going to happen. There is plenty of time to ask your questions. Your treatment may consist of one or more of the following components:

Clinical Trials

Five specialized hospitals in the Netherlands work together in the field of GIST. This collaboration is called the Dutch GIST Consortium. The five hospitals are: the Netherlands Cancer Institute, Erasmus MC, Radboud UMC, UMC Groningen and Leiden UMC. Medical specialists from different fields (including pathologist, radiologist, surgeon and medical oncologist) meet regularly. They evaluate national guidelines and discuss new studies and research results. They use a database with data from GIST patients. This information helps to provide better care

Overview of trials at the NKI

Read more about making an appointment and second opinion here