Tested postive for Lynch Syndrome: Anyone have this?

I was diag with lynch after a colonoscopy and a biopsy confirmed colon cancer in 2015. I already had a total hystetectomy in 1994 due to endometrial cancer. In 2015 they performed a partial colectomy, as yhey negan surgery they found cancer in my bladder. Then just 10 weeks ago the removed my compleye large colon and repaired a hernia. They were able to connect my small intestines to my rectum, so I didnt have to have a colostomy. I have bladder scans every 6mths, endoscopy every yr and proctoscope. Mamo every 2 yrs. It seems like whaen i start to feel good and regain my strength, start to feel normal, something else happens. U kinda feel like ur on needles and pins all the time, just waiting for the next ball to drop. Frustration and very tiring

Hello!

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.

Teresa

@bsox901 @hrant @travelgirl @skunklady13 @barblacanne @neeter

bsox1901
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

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.

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.

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?

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.

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.

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.. 🙂

Thank you very much.