Explaining G. I. S. T.

The type of cancer Ryan has been diagnosed with is called GIST--GastroIntestinal Stromal Tumor. This is a tumor that occurs in the digestive tract, or in Ryan's case in the stomach. Gastrointestinal tumors are not uncommon, but  GIST is different because of the type of tissue in which they start. They are not a muscle or nerve tumor, but rather begin in the cells that line the walls of the GI tract. GIST's are further distinguished as belonging to a group of cancers known as  soft tissue sarcoma. Soft tissue sarcomas are a group of cancers that develop in the tissues that support and connect the body.

GIST is very rare. Approximately 4,000--5,000 adults are diagnosed with it every year in the US, as compared to approximately 230,000 adults diagnosed with Breast Cancer every year. Along with it's rare occurrence, GIST is equally unique from other cancers in that traditional treatment measures do not work to fight it. Radiation and traditional chemotherapy have no effect on this type of cancer cell. The treatment options available are pretty basic from what we know so far: surgery to remove the tumor as we've done, and two chemo-pathic drugs called Gleevec, and Sutent.

In Ryan's case we know the cancer has spread at least locally, as evidenced by the spread to his abdominal fat pad and the implants along the abdominal wall that Dr. Mitchell was unable to remove. That makes him a candidate for the drugs, which he will be on for the rest of his life. That is another distinguishing feature of this cancer: the treatments available serve only to remove large growths and prevent smaller areas of the cancer from expanding. There is no "beating it". It will always remain in his body and our goal through treatment is to keep it at bay for as long as possible.

We are not sure of anything reguarding how Ryan's cancer will be treated yet. We know there are the two possible drugs, but we do not know if they will both work for him, or how his body will handle them. If they both turn out to be options for him, then he will begin one and stay on it until the cancer develops a resistance to it. At that point they will switch him to the second and he will remain on that one until the resistance develops again. There is currently a third drug emerging in clinical trials as a great candidate for treating GIST, and hopefully we could move onto that when the time arises. What we have no way of knowing at any time in advance is how long each drug will work for him. We have no idea if, by the time he has gone through all 3 possibilities, there will be a 4th option available to us. We don't know if he can work during initial treatment, or if he can ever work again given that this will be a life-time treatment plan. We don't know how long his life time might be. For now it's just one moment at a time.

There are no solid statistics on survivorship. There are countless variables in each case of GIST, and so the risk to each individual differs. We do not have all the information about Ryan's case yet-we do not know staging or rate of progress or exactly how far it spread throughout his body. We will hopefully get more information from his pathology report this Thursday at his follow-up with the surgeon. For now all we know is what I've just shared, and the good news that most people with GIST, even those with advanced disease, survive for years.