Gastrointestinal stromal tumour (GIST) is a rare soft-tissue sarcoma, which is a type of cancer that arises out of connective tissue. It can occur anywhere along the GI tract. GISTs are completely different from the more common gastrointestinal tumours (such as stomach cancer and colon cancers) because of the type of tissue in which they start. GISTs can develop at any age but usually occur in people over 50 years of age. GISTs are rare and almost all GISTs occur sporadically without a clear reason why they develop.
A new GIST diagnosis can be challenging and overwhelming. You should not have to go through this journey alone. Successful GIST management is a collaboration between the patient, caregiver and healthcare team.
We can help.
1 Gastrointestinal stromal tumors (GISTs) are uncommon tumors of the digestive (gastrointestinal; GI) tract. More than half of GISTs start in the muscular wall of the stomach; most others are in the small intestine; rarely, GISTs are found at other GI sites. GISTs aren’t the same as other, more common GI tract cancers. GISTs are very treatable.
2 GIST strikes randomly. When GIST patients gather, they are often surprised at the diversity of people in the room – male or female, young or old, rich or poor, of European or Asian or African heritage. We don’t know of any “lifestyle” factors, such as diet, place of residence, occupation, or chemical exposures that cause GIST. In short – getting GIST was not your fault and you should not feel any shame or guilt about having the condition.
3 GISTs are rare! Many doctors have never seen a patient who has GIST. You should definitely be treated by an oncologist (cancer specialist). If possible, find a GIST specialist at a major cancer center.
4 When you are first diagnosed with GIST, ask for a copy of your pathology report. This information will help you when you discuss your prognosis and treatment with your doctors. In most countries, “mutational testing” is also available. This is a molecular diagnostic test that may help your doctor to determine the therapy that is best for you. We encourage you to ask for mutational testing.
We partnered with Novartis to create the GIST Patient Handbook. The handbook is available for download in both English and French versions.
A list of the doctors with expertise in GIST, that have agreed to have their contact information available here, for you.