Adenocarcinoma of the endometrium: Pre-op prep & Diagnosis

Hi Helen, Val, and other "gals" !
Thank you so much for your help.
I am so tired...My "real" health issue-- the one that effects my life almost every moment-- is an autoimmune disease. It isn't doing too well right now. Might be the weather, or my diet, or my mental health, or all of them combined. I'm not thinking as clearly as I am able, so
I'm going to back burner the Lynch decisions until my body is better and until I've finished figuring out my social security/medicare options, which has to be done by April 1. Medicare A and B are easy. The part D drug plan is byzantine in its complexity since I get specialty medication that isn't on the medicare formulary. I am happy that I now understand that word...so much to learn and process. So much money depends on the correct decision. I can't let the Lynch distract me from priorities...since no Lynch symptoms.

I'll be back to this thread at a later date. Please know that I am grateful for your help and wish you well with your health issues. THANK 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?

Dear Val,

Thank you very much for your reply! I think that I may have already seen the document you discuss.

I just finished reading your reply and am still thinking about it, but I wanted to say "thank you" ASAP because I really do appreciate your taking the time to write to me.

THANK YOU VERY MUCH!

The University of Pennsylvania is having a Lynch Symposium this March, open to patients. I plan to go.

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.

I posted info on accommodations etc but don’t kn9w what happened to it?

Accommodations, we stayed at the Kahler hotel it’s literally across the road from the hospital and so convenient. Plus we went in December and there is not sure what to call it but access underground to shops that lead to the hospital. Best move we made.
We flew into Minneapolis from California and after research we found that there is a shuttle that goes from the airport to the Kahler hotel so easy. We also found an Italian restaurant close by that has a walk in take out food service all the hospital staff get their food there. Saved me a lot of money on food. I saw Dr Mariani but decided to get my treatment at Stanford since it was closer, dr Mariani did a second biopsy though.
I had uterus cancer in 2009 robotic surgery and all clear until 2017 when it recurred in my vaginal cuff. Make sure whatever you do keep up on your follow up I had my original surgery in my Texas when we moved to California no doctor wanted to use a speculum changed drs 4 times.
Just giving you some insight, doesn’t mean that this will happen to you apparently it only happens to 1% I just want you to be proactive and vigilant. Good luck.

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!

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...

@gynosaur42 This is all overwhelming. You wrote that you have lost two sisters to gynecological cancers and now there is your diagnosis and the worry about your daughter. Your post lays all of this out in a very straightforward way and I'm wondering how you are feeling.

I must say that I felt and still feel very much like you. I'm 70 years old and was diagnosed with endometrial cancer when I was 67. I was post menopausal and I did not have concerns with a loss of hormone from my ovaries. I hadn't heard nor did my surgeon or any physician tell me that removal of ovaries before 65 could be problematic. It felt like many things had already changed in my body from menopause and so I had to work at learning new ways to take care of myself and my body. The main issues were libido and vaginal lubrication which I could no longer take for granted. It wasn't until after my hysterectomy for the endometrial cancer that I learned from the Mayo Menopause and Sexual Health Clinic about how my sexual being had changed and how I could provide lubrication to myself as a daily/nightly practice.

Do you work with a mental health therapist? If so, can they help you figure out how to talk with your daughter? I hesitate to provide any advice since I don't know you or your daughter personally. I do know enough about anxiety having experienced it all my life to know that it is the anticipatory anxiety that is the worst. Once you do tell your daughter please suggest that she pursue medical appointments and genetic testing and counseling sooner rather than later. She may want to avoid all that but from my experience avoidance only increases anxiety. It doesn't make it go away or make everything better.

I was selective about who I told about my cancer diagnosis. I told my close friends and brother right away and also told them the outcome after my hysterectomy (Stage 1a). I knew that I needed support from the people closest to me and while I figured they might worry I didn't want to withhold my health challenges from them. I would want them to tell me if the situation was reversed.

You are lovely and generous person for trying to protect your daughter, your friends, and your family. I hope, though, that you do have someone you can confide in so that you will get the support you need.

When is your next medical appointment? Does your gynecologist want you to have any other tests or have they recommended a plan to you?

Introducing myself. I am 61; I first noticed post-menopausal bleeding in 12/21.

My next older sister had had endometrial adenocarcinoma FIGO 1 and total hysterectomy and bilateral oophorectomy in 5/2021. She had (understandably) waited 9 months to seek care for post-menopausal bleeding during the pandemic. Her experience sounds similar to that of others I have read here...challenging at first, but better as time went on.

I was fortunate to find a gynecology practice in my state that could get me in within two days. An ultrasound showed a thicker endometrial wall than ideal (mine was 7mm whereas 4 was the upper range of normal), and a uterine polyp was removed. Pathology lab came back within normal limits.

Sadly, an older sister with whom I had had less contact than I would have liked, died in 7/2022 of a gynecological cancer (that I do not have details about as her children seem to have been too embarrassed to ask for details and never contacted us until after she had died) that metastasized to her lungs and brain. She had had a total hysterectomy 6 years prior. My niece told me that my sister's medical team did not initially suspect that her lung symptoms were due to cancer at first, but a biopsy of her lung revealed that this was a metastasis of the original gynecological cancer. I am still grieving the loss of that sister.

A year later, in mid-December 2022, I experienced bleeding again. My gynecologist performed a hysteroscopy, D&C and polypectomy last week. She called me yesterday with the news that the polyp has adenocarcinoma FAGO 1, with atypical hyperplasia of the myometrium. I cannot follow up with local gynecological oncologists until Monday. There are two hospitals with gynecological oncology teams equidistant from me, so I may need to decide on one. I have an appointment for genetic counseling that the gynecologist referred me to, but that appointment won't take place until after the surgery, so I can't use that information to inform my treatment choices. I am very comforted to find this group, however, which makes me wish that Minnesota were closer to me.

I, too, have read too much already, including about weight gain, loss of ovarian hormones if I have an oophorectomy, loss of sexual function, possible consequences of the loss of nerves, tendons, blood supply and structural separation between bladder and rectum due to loss of the uterus and other structures. My gynecologist suggested that there are potential negative health consequences related to removing the ovaries before age 65 (4 years from now). Other websites I read state that ovarian contribution to hormones is life-long and loss of them can be quite significant for cardiovascular and mental health. Whew! I worked way too hard in my life to create a healthy body capable of experiencing sexual pleasure, satisfaction and joy, and feel quite concerned and sad about the prospect of losing all of that. I need accurate information, but also hope. I have some other diagnoses that can make cancer especially difficult to beat, so feel afraid on that level.
I also need support around informing my young adult daughter, as there is now too much information about familial gynecological cancers...the ratio is way too high among myself and my sisters. She will need to know at some point for her own health monitoring, and she will need to hear that I am facing cancer, even if at a very early stage. My daughter experiences a lot of generalized anxiety any way. I wrestled with whether to tell her about the hysteroscopy ahead of time and decided to wait to hear if there was anything significant. Bummer. Now I know I have to tell her but need guidance as to how.

I am grateful to this group for a place where I can say what's so for me, without feeling that I am causing my friends and family to worry. Thank you.