GIST stands for GastroIntestinal Stromal Tumour. GIST is a rare sarcoma (see below) that can occur anywhere along the GI tract. GIST is completely different from the far more common carcinomas (such as stomach cancer and colon cancer), in terms of both biology and treatment. We estimate that about 500 Canadians are diagnosed with GIST every year. Most cases occur in older people, but cases in young adults and even children have been seen. GIST is rare and strikes randomly; there are no known risk factors and no ways to prevent it.
Until 2000 GIST was little understood, misclassification was common, and the prognosis was poor. Over the past decade, discoveries into the origin and development of GIST have completely changed the medical community's understanding of the disease and led to the development of molecularly-targeted therapy. GIST has become a focus of cancer research efforts, and shows the potential for turning basic science into breakthrough treatments. GIST patients hope to see the disease become a chronic condition to be managed, rather than a life-threatening crisis; and while we aren't quite there yet, there is progress.
Because it is so rare, many doctors are unfamiliar with GIST; unlike persons with more common forms of cancer, a GIST patient may be the only person in their area with the disease, even in a city as large as Kitchener or Kelowna. Patients see the value of being pro-active in their treatment and are using the internet for communication and for the sharing of experiences among patients, caregivers, loved ones and medical professionals, and this has been one of the driving factors in the growth of Life Raft Group and other support groups.
Sarcoma: one of a group of cancers that occur in tissues such as muscles, nerves, and blood vessels.