Adenocarcinoma of the endometrium: Pre-op prep & Diagnosis

Hello, Helen, and all,

Thank you very much for your kind, thoughtful and supportive response to my introduction. It has been a long and busy week, so I am finally able to write back. I first heard from my gynecologist a week ago today that my biopsy showed a polyp with adenocarcenoma FIGO grade 1, with diffuse hyperplasia of the endometrium. I have a family history of at least two sisters having had this diagnosis, one of whom died in July, six years after her hysterectomy. My mother died of leiomyosarcoma when I was 29. It does not feel safe to wait a long time to schedule the hysterectomy. My GYN made referrals to two hospitals close to me last week. I did not hear from either one until today, where the earliest they can get me in for a consult is 2/27. I called the other and learned that my referral had been received, but the paperwork has not yet made it into the pile of cases to be assigned for review and assignment to a surgeon. So I will wait another weekend for a response from them.

Luckily, after reading here last weekend, I decided to take a chance and ask for an appt at Mayo Rochester. THEY were the first to call me back. I now have a consult on 2/6 with Dr. Mariani. Mayo feels SO much better prepared to address my needs for prompt care than the two local hospitals at this point...again, I am grateful to this group for the information that inspired me to call here.

To answer your questions about support, first, thank you! I am a trauma therapist, myself, and have a colleague with whom I have traded sessions. She made herself available to me first thing Monday morning and I came away with a dramatically improved emotional mindset, able to stay present to the cues of safety and opportunities for connection in each moment. I was and am super grateful.

I am doing my best to prepare myself for alerting my clients that I will need to turn toward my own self-care for a while in the near future. In this current peri-pandemic era, the level of need is SO great and finding alternatives for therapy for those folks is no easy task. But, today I sent out an email to a community list of therapists and was relieved to hear back from a few folks that they have openings. I am hopeful on that score, as caring for myself will be MUCH easier to the degree that my clients are in good hands.

By last night (after scheduling the Mayo appointment), I was anxious again...reading Nature Girl's posting about her experience of her hysterectomy at Mayo while living at a distance was VERY helpful! Thank you!!!! I believe we will need to fly and hearing that staying in the area for two days to allow the abdominal gas to dissipate makes me feel more confident that I can fly home afterward without too much discomfort (had a nightmare about being kicked off the flight for screaming in pain during turbulence...!!!) . It is also very helpful to hear that surgery was scheduled relatively soon after the consult. That gives me hope that I am not giving whatever this is a chance to metastasize beyond my uterus before I can get it out, as I imagine may have happened for my sister.

I am waiting to have a plan before I alert my daughter. The less uncertainty I introduce to the situation seems better for her. I can also give her choice regarding what she is up to hearing at each moment and focus on listening to her feelings, needs and questions. The more I have processed at least some of my own emotional reactions beforehand, the better I imagine I will respond to however she reacts. Again, I am grateful for the support offered to me in words and hugs!

One other question I have is about preparing to travel to Mayo for surgery. I see that there is a travel agency connected to Mayo. My husband wanted to arrange the flights (so we'd get to cash in points) but I would be interested in learning lodging options. I have food allergies, so would prefer something with a kitchenette or an Airbnb, etc. Or, am I not going to be hungry, so it's a moot point? Is it possible to use the travel agency for questions without going through them to book flights or lodging?

I can't believe I'm arranging medical travel for myself, but everything I read makes me feel safer here than waiting a longtime to receive treatment locally. Maybe there are things for us to look for on the way there (doubt I'll feel like it on the way back to Minneapolis)? I've never been to Minnesota!

Again, with gratitude for this opportunity to learn and receive support...

Hi gals!
I hope you all are doing okay. From your posts, you seem like nice people!

I hope you all can steer me to some in-depth resources for information.

My gyn, gyn/oncologist, genetic counselor are all pushing me to get a radical hysterectomy. I'm not sure if I should get one.

I feel like I don't have clear information on the risks of radical hysterectomy, especially on the removal of the ovaries before age 65.

I am 62, post-menopausal. I have NO symptoms! My test results have all been within normal ranges. I have one benign uterine polyp. Tests that they have done: CA 125 blood; ultrasound of pelvis and uterus; endometrial biopsy; pap smear.

I did test positive for PMS2, duplication of exons 11, 12, which does increase the risk of endometrial cancer, but some geneticists now dispute that finding. I have 3 sisters, 2 aunts, my mom, grandmom, and one daughter, and 7 nieces over the age of 40. Of all of these female relatives, only one sister was diagnosed with endometrial hyperplasia and she did have a radical hysterectomy.

I had surgery to remove my gallbladder and repair a hernia at the same time. It was a fiasco! I really don't want to do another surgery unless there is clear evidence that it is needed. I feel like I have not been presented with all of the risks-- short and long-term-- associated with a hysterectomy.

I live in Pennsylvania. Would a Mayo gyn/onc do a tele/video visit, do you think?

Thanks for any input! Hoping you are as healthy as possible!

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.

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.

@val64 Thank you for your very complete response to @annewoodmayo. Like you I was postmenopausal when I had a radical hysterectomy with bilateral -salpingo-oopherectomy in 2019. My recovery from that surgery was relatively quick and I haven't noticed any changes or differences. I was already experiencing vaginal dryness which is common during and after menopause and have been using moisturizers to treat the dryness.

@annewoodmayo You can certainly ask whether a gyn-oncologist at Mayo would do a video visit with you. I wonder, though, if there might be a reason to see you in person in case a physical exam is required for a first visit.

Here is the link you can use to request an appointment at Mayo Clinic. This link works for all three campuses (Rochester, MN; Phoenix, AZ; and Jacksonville, FL.
http://mayocl.in/1mtmR63
Are you planning to see your local gyn-oncologist again as you decide what you would like to do?