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Tested postive for Lynch Syndrome: Anyone have this?

Cancer | Last Active: Jan 19, 2023 | Replies (40)
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@mims391

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

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 12, 2017

Hello @mims391 and welcome to Mayo Connect! I am so sorry that you have experienced so many cancer related problems. I can certainly understand why you feel like you are living on "pins and needles." As a person who has experienced three surgeries for a rare form of cancer (neuroendocrine tumors) I can relate to the frustration you feel.

Please continue to share with us how you are doing and what you are feeling. Here at Mayo Connect we are here to listen and be supportive of your health journey.

If you care to share more, when will you have your next follow up test?

Teresa

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mims391 | @mims391 | Oct 12, 2017

this Dec. 2017 I will have and endoscopy and proctoscope. Jan 2018 is the bladder scan. Past MRI shows that have many nodules in my lungs but they have been stable over the past year. The last endoscopy showed pre-cancerous cells in my stomach, so I'm kinda anxious to see what the upcoming scope shows. Not presenting any symptoms for stomach cancer but do get out of breath just walking cross the street, which very uncomfortable feeling.

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