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  From raina3 October 8, 2008

  Hi Tanya, How frightening about your risk factor. How did you discover the risk? what led to the genetic testing? I have four children too, incidentally. My son was getting 'scoped' every six-nine months because of his ongoing g.i. problems stemming from a rare chromosome syndrome and primary immunodeficiency he has. His stomach lining had been abnormal for awhile, but went from non-malignant to fast developing malignancy sometime between Sept. '07 and May '08. What made it switch over to cancer when it did, its hard to figure out. Cancer is scary and g.i. cancer seems to be very aggresive and fast moving. Our oncologist said it is ' not to be trifled with'. Which you must have been told as well. I think it can quickly move out of the stomach lining and invade surrounding areas. My son is doing, i would say, just ok. It is a tough surgery, but his was complicated by the fact that four days after his total gastrectomy he developed a leak in the upper join between esophagus and intestine and so developed a bad infection in his intestinal wall and had to be rushed into a second surgery. This was very traumatic for all of us as you can imagine, but I think is quite rare. His nutritional status was not so good and I have since learned that low pre-albumin levels prios to surgery can greatly increase the risk of this complication. this is the level of protein the blood if you don't know. So, it might be wise to check this on yourself before the surgey, if you have it. This would help to ensure you don't have to go through what he did. So, it is hard for me to say how it would have been different if he had gone straight from the gastrectomy to recovery. I imagine he would be firther along now then he is. He had the surgery in mid-July and is doing pretty well, but will probably only be able to do 2-3 hours of school for the foreseeable future, gets tired, has fairly frequent bouts of diarrhea and episodes of nauseau. He has not had too much trouble with 'dumping syndrome', I think the eating thing is very individual in terms of which foods or drinks cause trouble or not and it seems you have to experiment with that. We are working with a nutritionist and he is having j-tube feedings at night, but I think he is losing weight. (he had a j-tube put in after the emergency second surgery, I don't think that is standard). Anyway, thats it in a nutshell. I'd love to keep up corresponding with you, and know how things are going. I look forward to hearing from you and sharing, blessings to you, kate

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  From raina3 October 2, 2008

  hi, i'm not sure what your illness is, i don't recognize it, is it cancer? my son had a total gastrectomy in july for cancer. it is difficult surgery, when are you scheduled? my good thoughts are with you and write to me if you want, blessings, kate

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