Hi Anne,

Something that might interest you is a long, dense document from the NCCN Guidelines called "Genetic/Familial High-Risk Assessment: Colorectal," which contains screening and prevention guidelines for people with Lynch syndrome, among other things. This is intended to be used by physicians. Getting to it is a bit of a pain. Go to nccn.org, and on the menu on the left side of the page click "Detection, Prevention and Risk Reduction". Click on this document, and it will make you sign up for a username and password. You may need to say that you're a medical professional. I have access to it, but think I'm probably not supposed to post it here. (Although I will do so if you want to see it and can't get to it. Or maybe I can send it just to you.)

This document has different sections for the different genes that can be mutated in Lynch syndrome, although it doesn't go into individual mutations. (It doesn't, for example, mention the PMS2 exon 11-12 duplication.) It does contain estimates of risks for different types of cancers in people who have mutations in the different genes. The risk in people with PMS2 mutations are significantly lower than in peoples with mutations in other genes. Among the things that this document says in a section labeled LS-E, which is specifically about PMS2, are:

" Total hysterectomy has not been shown to reduce endometrial cancer mortality, but can reduce the incidence of endometrial cancer. Therefore, hysterectomy is a risk-reducing option that can be considered."

and

" Insufficient evidence exists to make a specific recommendation for RRSO for PMS2 pathogenic variant carriers. PMS2 pathogenic variant carriers appear to be at no greater than average risk for ovarian cancer, and may consider deferring surveillance and may reasonably elect not to have oophorectomy.
BSO may reduce the incidence of ovarian cancer. The decision to have a BSO as a risk-reducing option by women who have completed childbearing should be individualized and done with consultation with a gynecologist with expertise in LS."

So they aren't recommending hysterectomy/oophorectomy very forcefully.

I don't know of any concise documents about the risks of hysterectomy/oophorectomy. My feeling is that this is something that the gynecologic surgeons do lots of and are quite good at, so that the risks of short-term complications are low. I had mine last year after menopause (at 57) because of cancer, and I haven't noticed a difference in menopausal symptoms. (I'm not on HRT or any other sort of menopause drug.) My mom and both of her sisters had prophylatic hysterectomy/oophorectomies 30 years ago when they were ~50 because of a family history of ovarian and endometrial cancer. I never heard any regrets, although my mom, at least, was on HRT until she was ~65, and I would guess her sisters were/are? on HRT too.

A comment on doctors: there is no downside for them for over-treating you. They're probably worried that if you don't have the hysterectomy, you might come back in a few years with cancer, and you'll blame/sue them. So they feel like recommending the maximum treatment is the safest choice for them.

My non-professional opinion (I am NOT a doctor) is that having the hysterectomy and not having the hysterectomy would both be perfectly reasonable decisions. So if you feel more comfortable with living with the risk of cancer (which if found would have a high likelihood of being treatable) than with having the hysterectomy, then foregoing the hysterectomy may be the right choice for you.