Anyone else have Lynch Syndrome?

[PMBiscut]

Just curious to know what people decided with regards to preventative surgery and how they made the decision. I’ve only recently found out and don’t know any other women with it to ask about it.

TIA

Bump

Hello, yes, me - just diagnosed last month. I have been referred to a gynaecologist to talk about a hysterectomy but I think I want you wait until I'm a bit older (currently 41). Have you had any appointments yet?

Thank you for replying! No, I’m being referred now for a bunch of stuff and some additional testing so will hopefully get to speak to a gynaecologist in the not too distance future. I was thinking I might wait too as currently 37 so don’t feel like there’s too much of a rush but definitely want to hear what they have to say.

Hi there, you might find some support in this group - https://facebook.com/groups/lynchsyndromeUK/

There are quite a few posts from women discussing the pros and cons of HRT fairly immediately after surgery, or waiting 6 weeks, or waiting longer.

And some discussing the prospect of surgery and how long they might have to/choose to wait, balanced with the age of onset of cancer in their relatives.

A very personal decision but may be useful to read about the experience of others.

@HitthefloorforTaintedLove thank you for this

My mum has been diagnoaed with this after having bowel cancer last year aged 61.
I will be going to my GP tomorrow to ask about testing. Feeling really wobbly about it all as I suffer badly from health anxiety. @PMBiscut how are you getting on now?

@GentlyGentlyOhDear im sorry to hear about your mum I hope she is recovering well.

Ive decided to have preventative surgery so will be having the hysterectomy this year. I feel ok about it now thank you 😊

Have you already had your consultation? I have mine coming up soon and wondering what to expect.

@Jugglers876 yes I have. They basically take a bunch of information from you as you’d expect and then go through what the risks are depending on your age and variant so you can make an informed decision. I’ve chosen to proceed as I’ve had my children and they pointed out that should I get bowel cancer before the hysterectomy it could make that surgery more complicated.

Thank you, and good luck with your surgery.

Thank you @PMBiscut for replying and good luck with the surgery.
My GP sent the genetics referral across this morning, so no idea how long it will be until I hear anything.
I hope your consultation goes well @Jugglers876

I think it really varies by NHS trust. My sister's was a couple of months, mine was a year!

Wow a year!! That must have been an awful wait. Did you do any screening tests in the meantime or just wait for confirmation you had it?

I just waited - it was a year from referral to the genetics counselling and blood test, but only a couple of weeks after the blood test to be diagnosed as positive.

@GentlyGentlyOhDear i waited about 3 months to be tested, 8 weeks for results then it was about 2 months to get my first colonoscopy and then another 2 months for gynaecology consultation. I found once they knew they moved quickly in NHS terms. They deffo seem to take it seriously

That is good that the referrals and screenings happen quite quickly once it is confirmed.
Is it managed by the GP or is there a consultant leading it all?

Yes me. I’ve known for roughly 20 years, I’m now mid 40s. I had a preventative hysterectomy and oophorectomy three years ago. I’d had my family and decided it was better to prevent than cure. After I agreed to it, it took about 7 months for it to be arranged and done.

@Ghostlyfeet if you don’t mind me asking did you have HRT patches and if so how did you find them? I’m most nervous about getting those right

I did. They gave me them before I left the hospital as I was more worried about early menopause and what that would mean for me (and my sex life) than the surgery!! I’ve had very few symptoms and stayed on hrt since then. The patches stopped working for me after a few months, I couldn’t absorb it properly and I started taking hrt orally instead. I only knew because I started getting really really achey. I’d get out of bed and feel like I’d been hit by a car. But that stopped as soon as I changed method. That and painful calves have been my only symptoms and magnesium has helped with that

@Ghostlyfeet thank you I appreciate that. The early menopause is my main concern. I’m very worried about brain fog as I’ve got ADHD and already struggle with memory and concentration. Also a bit worried about sleep as I’ve been a terrible sleeper for years and have started trying to improve it and am worried it’ll get messed up again.

That's my main concern as well. I could never take the pill due to the side effects and worry that I also won't get on with HRT.

I'm brca2 which is different but I think there are similarities in terms of decisions about preventative surgeries etc. There's a good charity called BRCA Chat which, in spite of the name, isn't just about BRCA. The website says they cover Lynch too. https://brcachat.com/.

Good luck with your decisions and your surgery. These are really huge, scary decisions.