Last year i tested positive for Lynch Syndrome. Does anyone else have this?
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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
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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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?
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.
@mims391 Thanks for letting us know when you will be having your follow-ups. I’ll be checking in with you to see how you are doing. I’m glad that you are not showing any symptoms.
Have you been told what kind of lung nodules you have? You said that it makes you short of breath, any other symptoms?
No, I didn’t know there were diffeent kinds, can u enlighten me. No other symptoms, I do get tired easily, but that could stem from many of my issues.
It appears that lung nodules can come from different sources like healed scar tissue, from an infection or from an irritant in the air. Here is a website that explains more, https://www.thoracic.org/patients/patient-resources/resources/lung-nodules-online.pdf.
Yes, your fatigue could certainly be from other health issues.
I thought you might be interested in viewing this video by Mayo Clinic gastroenterologist and medical oncologist, Dr. Frank Sinicrope, M.D., about Lynch syndrome:
– Understanding Lynch Syndrome https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/understanding-lynch-syndrome/
Teresa, how old should children be before they are tested for Lynch Syndrome. Their grandmother and Dad have the mutation and are checked
regularly. The parents want to make sure the kids won’t be lose health insurance and /or life insurance before and if laws change. They plan to have
them tested between ages 18 and 21 years old. Knowing too early could be an emotional burden on these kids. Father and grandma have scans
and scopes yearly. Please advise! Their parents are savvy and make sure they have all their checkups and vaccines. Both are currently healthy!
@moo1, generally genetic testing isn't done until children are at least 18 from what I've read. It can be a huge emotional burden. Here are a couple of useful articles:
– Genetic Testing of Children for Lynch Syndrome https://www.curetoday.com/community/georgia-hurst/2018/11/genetic-testing-of-children-for-lynch-syndrome
– Mayo Clinic Q and A: Lynch syndrome and genetic testing https://www.curetoday.com/community/georgia-hurst/2018/11/genetic-testing-of-children-for-lynch-syndrome
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