Prepared by David Josephy, President, Life Raft Group Canada, and Ginger Sawyer, GIST Support International
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.
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
5 Ask your oncologist whether your GIST is “localized” or has “metastasized” (spread). If the tumour is localized, surgery is the first line to achieve a cure. If the GIST has spread, surgery may still be recommended, but additional therapy will be needed – probably, oral drugs. The recommended drugs most commonly used today are imatinib (Gleevec), sunitinib ( Sutent ), and regorafenib ( Stivarga ). (In each case, the generic name is given first, with the major brand-name in brackets). In some cases, surgeons recommend taking Imatinib prior to surgery to reduce the size of your GIST and make surgery less invasive.
6 Even if a localized GIST can be removed by surgery, your oncologist may prescribe “adjuvant” therapy. This means that he or she will recommend that you take Imatinib every day, at least for a few years, to reduce the chance that the GIST will return.
7 Some GISTs do not respond to Imatinib or become resistant to Imatinib; however, there are other approved drugs, should this occur in your case. There are also new drugs being developed which, we hope, will also be effective treatments for some patients.
8 The oral drugs used to treat GIST are expensive. Even if you do not have insurance coverage,there may be ways to reduce your drug costs. Contact a support group and ask for information about assistance with paying for your drugs.
9 Oral drugs for GIST can be very effective, but they can all lead to unpleasant side effects, such as nausea, fatigue, fluid retention, and cramps. Many of these side effects can be treated successfully. Don’t “suffer in silence”. Tell your doctor about any side effects and ask for help in handling them.
10 We believe that every GIST patient should be an informed patient, empowered to advocate for the best possible treatment. Please contact a support group such as GIST Sarcoma Life Raft Group Canada, The Life Raft Group , GIST Support International. These organizations are ready to help, providing helpful free information and resources.