I will look into it , thank you
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I just found out during my yearly colonoscopy ( preventive for Lynch syndrome ) that i have a non bleeding AVM arterio venous malformation in the transverse colon . Is anybody living with this ? am i supposed to wait till it start bleeding ? and then what ? i would appreciate all views and ideas . i am 62 male super healthy ( besides MSH6 lynch syndrome )
Dec 13, 2018 · Living with colorectal cancer - Meet others & come say hi in Colorectal Cancer
Diane , you have to tell us more , tell us what the biopsy says and a little of your background . if the tumor is under 10 mm. do not panic . obviously it is better not to have a cancerous tumor . what is done is done panicking is not going to change anything , in fact it is bad for you . You have to stay in control now to fight this .
there are 5 kinds of genes that could be damaged MLH1 , MSH2 , MSH6 , PMS2 , EPCAM . you have to know which one is the problem with you .
one out of 450 people have Lynch syndrome , most of them do not know when there is no symptoms . some live they entire life without getting any cancer , but you cannot leave it to luck . you have to keep testing and probing and looking for the cancer till you find it at the initial stage and get rid of it . but bare in mind (as you can read on this website ) doctors make mistakes too ( read the story of travelgirl ) , lynch is very aggressive and a polyp could turn into cancer in 2 years compared to 10 years for non lynch syndrome carriers . one more thing and this one keep me up at night ( not really ) the best doctors statistically catch 75% of the polyps in the colon , because the colon is so accordion like and there are many places a small or flat polyp can hide .
take care , Hrant
yes you are very lucky , About the genetic testing , maybe someone has made a mistake over there too , I even read that some proteins that are around the genes have the power to switch the genes on and off ( nobody knows why and when ), some people never get cancer even though they are lynch positive . there are a lot of unknowns in this field .
Something came to my mind for you if I may say it , even though you are not lynch positive , why don’t you treat yourself as it was positive and just fallow all the testing recommendations that apply to you . it will be a little expensive depending on your insurance plan but I decided when ever my plan says no I do it anyway and pay out of pocket . I am going beyond the NCCN guidelines . All of this including my yearly health insurance and all tests are roughly costing $ 10 K per year , which is fine with me .
maybe you want to consider that .
Take care , Hrant.