"THESE FINDINGS SUGGEST THAT PROPHYLACTIC TOTAL GASTRECTOMY, RATHER THAN ENDOSCOPIC SURVEILLANCE, IS THE BEST PREVENTATIVE MEASURE"

"Several samples obtained at the time of prophylactic gastrectomy in asymptomatic individuals with a CDH1 mutation revealed occult disease on microscopic analysis even though each individual had normal screening tests prior to surgery.  These findings suggest that prophylactic total gastrectomy, rather than endoscopic surveillance, is the best preventative measure for individuals who have a CDH1 mutation."

That is word for word what my report stated from my genetic counselor after finding out my CHD1 gene is mutated.  What does that mean in simple terms??  These CDH1 mutation carriers who had ZERO symptoms, did tests, endoscopies, etc. and their results came back that there was NO cancer of any sort.  These people, because of their mutated gene and the 83% chance of still getting the hereditary diffuse gastric cancer, still decided to have 100% of their stomach removed.  Once the stomach was removed and biopsied, it was found that there were cancer cells.  I have read a TON of blogs and to be honest, I have only read one....ONE....where they tested fine before, had their stomach removed, and it came back with NO cancer cells.  THAT is crazy to me and solidifies for me why I WANT/NEED to get this done!!!