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Preventative hysterectomy MSH6- Yes or No? Preventative hysterectomy MSH6- Yes or No?

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  #1  
Unread 06-12-2017, 01:21 AM
Preventative hysterectomy MSH6- Yes or No?

Hello,

Apologies if this question has already been asked/answered- trying to navigate my way around this site.

Wondering for those with MSH6- if a preventative hysterectomy needs to be done? Or if anyone has opted not to?

Trying to gather info before my appointment this week.

Thanks for any feedback.
  #2  
Unread 06-15-2017, 06:40 PM
Re: Preventative hysterectomy MSH6- Yes or No?



I'm afraid I don't have any firsthand experience regarding your specific question. But, I am very glad you're consulting a gyn/onc as they are the experts and would best be able to advise you in this area. For that appointment, write down any questions or concerns you might have and take someone with you, if at all possible (another set of ears). Oh, and be sure you have copies of all your test results, etc., for your own reference.

Do your research, get as many opinions as you need, then do what you feel is best for yourself long term. We're glad you found us!

  #3  
Unread 06-16-2017, 03:06 AM
Re: Is there anyone who has had Preventative hysterectomy for MSH6?

Hello
I have MSH6 (Lynch Syndrome) - I had a preventative hysterectomy Sept 2015 - I'm aged 44 now.
Mine was full hysterectomy / both ovaries / tubes / cervix and I'm on HRT now. Apart from taking plenty of time to recover (5 weeks off work, 6 months before starting exercise), I feel perfectly fine now - and HRT is excellent!
Any questions?
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  #4  
Unread 06-16-2017, 06:21 AM
Re: Preventative hysterectomy MSH6- Yes or No?

Thanks Monami & Ewarts.
I'm trying to gather opinions and research info in order to work where to next.

My mum had a hysterectomy years ago, have a little understanding of the after effects. I was curious if others have had the operation for a preventative measure as a lot of posts appeared to be for other reasons.

Regards to questions- I've had so many but have had many answered reading posts. Is a full hysterectomy usually the way for MSH6 ?

Thanks again ladies for your messages.
  #5  
Unread 06-16-2017, 06:43 AM
Re: Preventative hysterectomy MSH6- Yes or No?

I’m not sure about the general advice given – I can tell you my experience. My gynaecologist was keen to suggest that everything I didn’t need any more be removed.
The statistics that were given to me was that endometrial cancer was the highest risk for MSH6 women (higher than colorectal cancers). Apparently my lifetime risk of any Lynch cancers has now dropped from 70% to 25%
Ovarian cancer is a lower risk for us, but is much harder to detect and the symptoms could go unnoticed. Pre-hysterectomy I was having endometrial and ovarian scans every year, where they kept telling me that they couldn’t guarantee to spot everything.
I was warned around the time of the operation that I still could get “ovarian cancer” in the future. Basically, ovarian cells could have floated off into the tummy area pre-op, and could one day cause a cancer growth in the tummy which when inspected would show all signs of being ovarian. Post-op I’m not being scanned for this.
It was suggested that I go on HRT afterwards to lower my risk of osteoporosis, given my age. It’s only oestrogen, (as the progesterone would only be useful if I wanted to lower the risk of uterine cancers)
I had my cervix removed too to remove any cervical cancer risks too even though it’s not a high risk for us, and to prevent the need for smear tests in the future.
Can I suggest you search on facebook for Lynch Syndrome groups? The UK group was great for advice and support from other people doing this for prevention.
  #6  
Unread 06-16-2017, 07:30 AM
Re: Preventative hysterectomy MSH6- Yes or No?

Thanks for your detailed response. You must feel some relief that the percentages have dropped after the op. My mum has also had uterine so the risk for me is there as well I guess from a hereditary perspective. A few years ago, I had an ovarian cyst which was thought to be more. Looks like I will have to be vigilant with those risks as well. Had joined a few facebook Lynch groups prior to finding this site. It's good to know there are others on the same journey so to speak.thanks again for your info/ help, much appreciated.
  #7  
Unread 06-17-2017, 06:24 PM
Re: Preventative hysterectomy MSH6- Yes or No?

Hi! I'm lynch positive also (msh2) and had a prophylactic hysterectomy and oophorectomy. I'm not too familiar with your variant but just wanted to reach out and lend a little support. Im 34 and had my procedure last month. One thing that really helped me was talking with a genetic counselor. She was able to give me some really great advice and info on my particular cancer risks. It was an incredibly valuable experience for me. If you haven't already I suggest you start there. I know how scary this can be. How are you doing?
  #8  
Unread Yesterday, 04:53 AM
Re: Preventative hysterectomy MSH6- Yes or No?

Hi Curious George... Thanks for your message. I've met Genetic counsellor and surgeon. Feeling relieved to have chatted to them now waiting for the operation....great to read others thoughts on the post op to gain some insights. Hope all is well with you.
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