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

Hi, I’ve only heard of this syndrome this weekend but am concerned about it. I’m mid 50s and and have had twice monthly bleeds for two years since starting continuous hrt( I have never stopped bleeding but had sequential HRT prior to switching to the continuous due to a blood test saying menopausal and being almost 54) and in the past 6 weeks this has changed to constant light bleeding. And some very mild cramping intermittently. I know I was stupid not going to the GP during this time but they’ve been very difficult previously and I just kept putting it off.
Anyway, I made an appointment and the GP has referred for a 2WW USS. I wasn’t too concerned as assumed I just needed to adjust my HRT but then I started reading about womb cancer and then saw the link to Colorectal cancers / lynch syndrome. I am now worried as my Ddad and two of his brothers had colorectal cancer (two aunts also had polyps removed) and my grandad had stomach cancer which I never mentioned to the GP because I wasn’t aware of the possible link. I am ten days into the 2 weeks and haven’t had an appointment date and my anxiety is starting to rise. Should I chase this up or just be patient?

Sorry for the long ramble!

Hi @JustHereWithMyPopcorn sorry to hear you’re facing a two week wait. Don’t blame yourself for not going to the doctor sooner, we all know what GPs can be like with ‘women’s problems’ and especially if you haven’t felt listened to in the past.

Good news is you’ve been now and you’ll be seen very quickly, the nhs is actually very very good with any suspected cancer, do you have the nhs app? Usually your appointments go on on there sometimes before letters arrive? Or it might give you an Idea of what your local waiting times are.

hopefully you’ll get your appointment through soon and your mind will be eased most bleeding is not cancer, it could be a fibroid or a polyp or something imbalanced with your HRT causing atrophy perhaps, there are lots of things it could be.

And if it is endometrial cancer then if it’s very treatable and usually presents symptoms in the earlier stages compare to other cancers. Have you told your doctors you have lots of lynch cancer history? It’s definitely something to mention if not, as they do take it very seriously in my experience and may mean you’re seen a bit quicker.

i hope you get your date soon and hopefully you don’t have cancer or lynch, lots of luck x

Thank you for responding @LilyinBloom86
and I apologise for detailing your thread yesterday, I was being a bit slf absorbed in my worry. I’m so sorry about your diagnosis and the worries it is bringing you. Thank goodness for modern screening, have you discussed with your doctor about the potential risks of going through another pregnancy or is that now out of the question?

I have the NHS app and I can’t see any referral letter only our appointment notes where she has written ‘urgent 2WW USS scan’ . I’m going to call the surgery shortly and find out what’s going on.