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Tested postive for Lynch Syndrome: Anyone have this?
Cancer | Last Active: Jan 19, 2023 | Replies (40)Comment receiving replies
A bunch of people in my husband's family (including him) have this. I know it causes you a bunch of screenings but, trust me, that is far better than getting the associated cancer. Many many people in his family have had colon and other digestive system and uterine cancers. It is fortunate to know you have it so you can head them off.
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nrocpop, great question. my genetics say I have Lynch. and Myeloma. Many lab tests show the same, yet doctors, including Mayo, refuse to test me for more rare cancers, etc. I also have LGMD, which causes me great pain., all the time. I am convinced that good testing, earlier, would cut down on my two-bit surgeries. So far, I have had 55 cancer surgeries for many minor and a few major issues (CABG, etc.). But can I get a full whole genome sequencing? No way. Or a Serum Free Light Chain test? No way. Or a Full PET Scan? No way. I do not know whether these doctors are just lazy, don't want to work for their money? or is that just Samaritan or Mayo? Whatever. I am tired of being mistreated like this. For a person suffering with amyloidosis , a sFLC or full body PET scan can relieve years of suffering. oldkarl