Anyone facing preventive hysterectomy after a Lynch syndrome diagnosis?

[LilyinBloom86]

Has anyone gone through or is going through something similar? I'd love to hear your experiences.

I recently found out I have Lynch Syndrome (MSH2). My sister had Womb cancer last year age 39, she is recovering well after a full hysterectomy and some radiotherapy. Her diagnosis prompted my genetic screening.

Our mum died age 50 of womb cancer, she had symptoms for several years before but the GP dismissed them as menopause & fibroids. Our maternal grandad died of stomach cancer age 60 and many of his brothers died younger than average from cancer.

So, there is a strong history of cancer in our family. Based on my genetics, I've been told my risk of womb cancer is 49% (compared to the usual population risk of 2-3%) so much higher risk.

I'm 37 and have 1 young child. We hadn't reached the stage of trying for another but I'm now being offered a full preventative hysterectomy. I will also face colonoscopies and gastroscopies every two years which I'm not looking forward to, but am very grateful for.

I'm scared of dying younger like my mum, and of any future cancers being aggressive and untreatable.

I'm just trying to decide what to do. I'm mourning the simpler life that's now gone, the choice to have another child which will be gone forever if I opt for surgery, and I have worries about menopause and recovering from surgery while caring for an energetic toddler!!

I have no current symptoms of womb cancer and have been on the pill since 17, but I'm naturally worried something could already be lurking based on my sister's experience.

Any thoughts or experiences would help calm my busy brain.
x

Hi @LilyinBloom86 yes I have lynch and had a hysterectomy/ oophorectomy three years ago to protect against womb cancer. I had finished my family by then, but was offered surgery at 40 which I took (it took a good 18 months to organise) I was given HRT for surgical menopause. Ive had some symptoms but it’s mostly manageable. My family history is bowel cancer and I have regular colonoscopies. I have been aware of having lynch for nearly twenty years so am now quite used to it. I consider myself lucky to be having heightened surveillance so whilst my chances of cancer are much increased- the severity should be decreased due to frequency of screening. For you though being new information I know it’s a huge shock. There is a couple of threads on here. Also the Facebook group
Lynch Syndrome Uk closed support group, can have some useful information on it. I find it a bit gloomy so only check it when I need information on aspirin/ colonoscopy prep but it’s a handy resource. Feel free to message me

Hi @Ghostlyfeet thanks so much for the reply. I'm glad to hear that your surgery and recovery has been manageable. And that living with Lynch long term makes the news a bit easier.

I think it's just the shock of it this first week, but I do feel better after a weekend with friends and some sunshine, I guess life goes on, and we are at least armed with lots of screening and that's a huge privilege.

I've had a look at the support groups and also found a Surgical Meno one on facebook which I may find useful soon. Thanks for the offer of messaging, I may well come back to you when I know my surgery timeline. Thanks so much, and best wishes to you x

@LilyinBloom86 it gets better and it gets easier I promise!! Just try and remember it’s just a heightened chance not a guarantee of anything. And the surgical menopause? It’s ok. And you can get it all done now and watch your friends suffer for the next 10 years… x