GIST Support WikiSo far, for most adult patients, GIST is just bad luck in a single cell. A series of "random genetic accidents" accumulated over time, and there was nothing much a patient could do to prevent it other than have general healthy lifestyle.
But then your neighbor across the street does not live a healthy life style and he did not get GIST. Nor does he trim his hedge regularly. Dealing with that issue of "it is not fair" is hard when you are the one who has the cancer. Of course, your neighbor across the street may have some advice for you...as to how you can be philosphical about your cancer, as he is off to the fried chicken shack around the corner.
For pediatric patients or Carney Triad, GIST does not seem to be a random mishap of a single cell, since these patients tend to recur with new stomach primaries. Something more systemic in the stomach organ is going on...perhaps it involves the signaling of the complex chemical signaling of the stomach's enteric nervous sytem...((many possibilities related to hormone signaling, oxygen metabolism, signaling from the enteric nervous sytem...nitric oxide, etc...)
Dana Farber and MSKCC are planning a very large genetic study of individuals with familial GIST, pediatric GIST, or who seem to have GIST with other conditons such a second form of cancer or NF-1. GSI will help raise awareness of and provide information about this study, once it is going. DF has been very gracious to invite the input of patient support groups. GSI and LRG have already provided our own suggestions to the project.
Now back to "just bad luck" Let's explore the concepts of different kinds of bad luck.
Bad Luck case number one. A chunk of ice falls off the wing of a jet plane, and crashes through your roof and smashes the Swarovski crystal collection on the antique table in your living room. Really bad luck. You look across the street at your neighbor's house, and think, "why me?? why not you...??" While you are feeling low, your well intended family member says "wow, a bummer, but remember I told you to buy the lot across the street and not this one. If you had listend to me, then this would not have happened. Do you eat enough anti-oxidants?"
Now consider, "just bad luck" case number two. A group is playing golf on the course, and a rain storm comes thru with lightning. One guy on the course gets zapped by a bolt of lightning, and his buddies standing next to him do not. Wow...what a stroke of bad luck for that one guy. The guy who was zapped was 42 yrs had five small children, and his 75 year old friend standing next to him who was retired and had lived full life mutters to himself, "why you, you had so much to live for, why not me instead?" Wait a minute...we later learn that the guy who was zapped by lightning was wearing metal cleat shoes and his associates were just wearing rubber soled shoes.
Regarding GIST and bolts of lightning....Maybe some of us were born with the equivalent of metal cleat shoes when it comes to cancer-risk, and we just don't know it. Maybe some information will shake out of genetic studies...to predict if there is a heritable predisposition factor. Let the researches have a look at the soles of your genetic shoes...
But if yours is the case of the Swavorski crystal collection getting smashed from the ice chunk that feel off the jet liner's wing...It is almost harder to accept that there was not much you could do...just bad luck. We can't control everything or have an explanation for why the series of unfortunate genetic abnormalities popped up in you and not your neighbor across the street.