Lynch syndrome

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Anyone else been diagnosed with this- I am gutted - bad enough me having cancer but to potentially pass it onto my daughters is heartbreaking 

  • Told I could possible have it when they got results from my biopsy. Had my hysterectomy on the 6th Sept and saw a genetic councillor on the 2nd Oct. Had a blood test and results will take 3 months. I have two sons, two granddaughters and a grandson. They said if I haven’t passed it on to my sons then they cannot pass it on to their children. I just pray they haven’t inherited it. 

    Sue. 

  • Tell me about it - I have 3 girls who all have children and they are being tested - also my brother - you just don't realise how far it spans out-Frowning2

  • Hi yes I had my op 29/2 and genetics app was 26/9 ! My dad will get tested as if I have it he is from a big family my mum isn’t here anymore so I just have to wait and see I decided to just worry about it when I get the results but I tried to find out how many people who go to generics do actually have it and she wasn’t sure and sone who she is convinced they have it don’t !! Good luck Fingers crossed

    Yes if children don’t have it they can’t pass it on xx 

    they won’t look at my siblings etc or children until I have my results x I have loss of MHS2 and something else I will check 

  • Hi mine is MLH1 PMS2 and hypermethlation not present x and MMR deficient 

  • I have been diagnosed with Lynch Syndrome following my endometrial cancer diagnosis. My children are currently being tested and I have 4 grandchildren. I understand it’s heartbreaking 

  • Do you know if your biopsy is tested every time for lynch syndrome as I have a family history that is dubious my uncle passed away with bowel /liver cancer on my dad's side on my mum's side two sister died from breast and ovarian cancer my sister passed away from breast cancer and myself has had Endometrial Cancer diagnosis in 2022 my operation was 24 May 2024 I am sure further back within my family history that cancer concerning bowel, liver and ovarian cancer is present.

  • You have a blood test to see if you have lynch syndrome- results take 3 months Frowning2

  • It's 50/50 that you children can inherit it

  • Thank you X 

    I was wondering if the blood tests are taken regardless of all medical history, was it your GP that took the tests or at Gynaecology 

  • Hi Wilma. I think they tested my biopsy for Lynch Syndrome as I had colon cancer in 2005. It should a protein or lack of a protein (can’t remember which) that suggested Lynch Syndrome. About 3 weeks after my hysterectomy I had an appointment at a genetic clinic. After a talk they sent me for a blood test which will come back either positive, negative or undefined??? Results take 3 months. If positive my family nearest family members can have a blood test to see if they carry the gene. 


    Sue. X