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Michaelb (@bsox1901)

Tested postive for Lynch Syndrome: Anyone have this?

Cancer | Last Active: Jan 19 8:28am | Replies (40)

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Hi @bsox1901, I moved your message to the cancer group to connect you with others talking about Lynch Syndrome. As you likely already know, Lynch syndrome is an inherited disorder that increases the risk of many types of cancer, particularly colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus. For more info see https://ghr.nlm.nih.gov/condition/lynch-syndrome

There are a few people discussing Lynch on Connect. Please meet @barblacanne @neeter both who have Lynch as well as @travelgirl and @skunklady13 who have been tested for the mutated gene.

Michael, what led to your being tested for Lynch syndrome?

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Replies to "Hi @bsox1901, I moved your message to the cancer group to connect you with others talking..."

Ive had two heart transplants at Mayo Clinic Jacksonville. They offered me genetic testing because of me family history. Both parents died of Cancer. Dad Colon 3/11/1983 Mom 5/11/2015 Leukemia.

Having tested positive for Lynch syndrome, what monitoring or testing is recommended for you that would otherwise not have been? Does this change your insurance options?

Hi, my insurance has not changed as I have Military insurance. I guess that does make a difference. I see like 4 cancer specialist a year. Mammogram, one a year colonoscopy, endoscopy, female and skin at least twice a year. My life has not changed. I’m just aware of what can happen. I’ve lost my whole family to Cancer, all different kinds and I’ve had Endometrial Cancer. Stay on top of it and find really good Dr.s and if you need help let me know. I’ve got a pretty good network. Hope this finds you well. Feel free to chat anytime. Huhs

My GI Dr @ Mayo is the one who got me tested. Since my positive result 6 months ago. I have had a Colonoscopy, ERCP, a Liver Biopsy and a MRI of my Pancreas. I have transplant checkups every year. This new protocol has been added to my testing. I see it as , Knowledge is Power.