Lynch Syndrome Risk Reducing Surgery – Lisa’s Story

Hi, I’m very new to all this so don’t really know where to start! I have a condition called Lynch Syndrome or HNPCC. My wonderful mother died 10 years ago at the age of 52 from Endometrial cancer. She previously had Bowel cancer too and at the time a link was not made but we now know she must have has Lynch syndrome too.

Lynch syndrome sufferers have an 80% chance of developing Bowel cancer, a 60% chance of developing Endometrial Cancer and 10% chance of developing Ovarian cancer, plus other cancers too.

Which is what has lead me to this site. In a few weeks I will be having a Total Hysterectomy and Bilateral Salpingo Oophorectomy (Uterus, cervix, fallopian tubes and ovaries removed).

Has anyone else had this surgery to reduce risks of getting cancer? Especially at a young age, I’m 37. I have never had any problems with my periods or my fertility so to my friends it seems a bit drastic!

***************************************************************

in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

9 comments

  1. Hi, I have just had a genetic screening blood test taken for Lynch Syndrome, but have already been advised to have a full hysterectomy and ovaries as there is a very strong family history of cancer, I am 44 yrs old, have finished my family, (13yr old and 4 yr old). At the moment the geneticist has said I probably shouldn’t have HRT as it can increase the risk of Breast Cancer which also runs in the family. Anybody had any experience of this?

  2. Hi Lisa
    I was just reading your blog and wondering how you are getting on? I have Lynch Syndrome too and am having TAH/BSO in a weeks time. At the minute I am very scared and wonder if the surgery is really necessary as I have no symptoms. I am 49 and not menopausal yet so worries about how havibg my ovaries removed will affect me. Be good to hear from you.
    Linda

  3. Normally, if you have a hysterectomy to deal with some sort of gynaecological cancer then the ovaries would be removed anyway. I think a chat with your GP and perhaps the gynaecologist might be in order before making any firm decisions.

  4. Hi great site, thanks.
    I am booked in to have my one remaining tube tied after years of failed pregnancies, earlier this year I also had large loop excision on my cervix with CIN2 diagnosed. previously had laser cell removal a few years earlier too. I am awaiting my latest smear results but when I had the smear the PAIN was terrible not the normal uncomfortable type we all have suring a smear, this was shapr severe pain, I have booked a doc appt to eb checked. However, what I am wondering now is should I just have a hysterectomy and have the peace of mind that the cervix cells cannot become cancerous, I am 37 and was thikning it would be better to leave my ovaries in so to avoid early menopause as my mother has oestoeporosis and I do take calcium to help my bones due to this. But I have just read on here I may go into menopause early anyway and how would HRT affect my bones, I have Never been good on hormone contraceptions and now worry about this, any advise welcome 🙂 x

  5. Hi Jacqui,
    It’s great to find a fellow Lynch Sufferer. Please let me know how you are doing. I wish you well with your recovery, Lisa x x

  6. Hi, i have had this operation that you will be having. I had many reasons for it along with pre cancer cells and a history of cancer i am now one week into post op and i feel great, just waiting on the pathology report to come back. Good luck with your surgery, im 42

  7. Lisa
    I too have Lynch Syndrome and had a LAVH&BSO 11 days ago.
    At 44 and with 2 grown daughters I firmly believe that it was not worth the risk in keeping my uterus, cervics or my ovaries; and although it is major surgery and an uncomfortable recovery, I would rather that then risk a tumour at a later date.

    Good luck to you xx

Leave a Reply

%d bloggers like this: