Mayo Clinic Connect
Last year i tested positive for Lynch Syndrome. Does anyone else have this?
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?
Liked by Jackie, Volunteer Mentor
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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?
Liked by Michaelb
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
Liked by Colleen Young, Connect Director
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.
It would appear you have an excellent Dr. that is very well informed. You have overcome many obstacles and many prayers for you. Feel free to text anytime
Thank you very much.
Hi Michael, I am as well a patient of mayo clinic in Jacksonville. I should know if I have Lynch or not in the next week. My test results are back I was told. Just waiting for the Lynch department to call me back with an appointment. But The GI Department at Mayo recommended I get it done after they confirmed I had a stage 1 Cecum Cancer and also Follicular Lymphoma. Both diagnosed 2 weeks apart. Lymphoma was found when they did the CT scan for the cecum cancer. I am Rare But Not Unusual words that are haunting…I wish it was beauty… LOL.. But I am happy you asked the question. I was assuming we are watched like hawks now with a Lynch diagnosis. The Dr’s at Mayo already have their Hawk eyes on me. God Bless my friend and stay on top with the Hawk Eyes who are watching you.. 🙂
I just moved back from Jacksonville to Tallahassee. My mother and i moved there 2 years ago. She passed away 5/11/15. So i moved in with sister. I travel back and forth for my transplant and Diabetes.
Lol Yes they do. Ive had two transplants at Mayo and then i developed diabetes as a side effect of rejection meds. God Bless you as well.
Hi @bsox1901 …. Wow can I ask what kind of transplants u have had? How long have you a been a patient at mayo.
I love mayo clinic in Jacksonville.. I just stated there as a patient last December. So far they been great to deal with. Even though they said I have two different cancers two weeks apart. I am glad they caught them both early. Although I’m a tad nervous hearing what my genetic texting came back as. I requested then to do a full blown genetic testing.. They asked if I wanted to know it all and I said yes.. Uggg.. I maybe nuts for doing so?
Hello @travelgirl , I have had 2 Heart Transplants 4/18/06 and 1/10/2012. Ive been a patient their for 13 years. I wanted my results as well. Knowledge is power.
Wow @ bsox1902 two Hearts that’s is wonderful.. Your one tuff cookie.. 🙂
Well tomorrow is D-Day for my Lynch syndrome results. I’m crossing my fingers I DO NOT have it. But we shall see.. I will keep you all posted.
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
My name is Teresa, @hopeful33250, and I am a volunteer mentor here at Mayo Connect. While I do not have Lynch Syndrome, I have had 3 occurrences of a rather form of cancer, neuroendocrine tumors. I noticed that there has not been much posting from you folks in a while and I was wondering how you were doing.
It would be nice if you checked in and posted about your experiences. How are you feeling these days? Any new treatments or any new problems that you have experienced?
We look forward to hearing from you.
@bsox901 @hrant @travelgirl @skunklady13 @barblacanne @neeter
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