Adenocarcinoma of the endometrium: Pre-op prep & Diagnosis

Hi All, feeling positive to hear all your stories. I have stumbled here while searching for my mother's condition. She ( aged 70) lives in India and have been diagnosed with Endometrial Adenocarcinoma NOS, grade II around 10 days back using biopsy method. Her pep scan and MRI scans are showing that its only in uterus and hasn't spread anywhere else. She is having her robotic surgery to remove uterus tomorrow morning. Doctor have said that she most probably wont even need radiation or chemo after the surgery. We haven't even told her the word "cancer" and have told that removal surgery is very common procedure for women of her age. We did not want her to panic as the word "cancer" seems quite scary. This has worked perfectly fine till now and she is in good spirits going in her surgery but it has made us ( me , my brother and my dad) quite worried and anxious. I am just writing here to share her journey virtually and possibly get some guidance for future.
thanks and good luck to you all.

@kkt78, I just found your post. I'm not sure how it slipped passed me. My mom also had uterine cancer which was luckily caught early. She had a hysterectomy and no further treatment necessary. She was 61 at the time and she's still with us. She turns 83 this week.

How did your mom's operation go? How are you doing?

I am 71 years old and had robotic hysterectomy for endometrial cancer on Dec. 7th. Recovery was amazing. A month after surgery and I am feeling like my old self. Even though I had had bleeding symptoms for over a year the biopsy had not picked up on the cancer. The cancer had not escaped the uterus and my cancer was a slow growing grade so I will not need chemo and radiation. It was helpful for me to know and speak openly claiming the cancer diagnosis. The unknown is more unsettling than the known. The best to your mother.

@kkt78 How did your mother's surgery go? Is she resting comfortably at home? What did the doctors tell you about the Stage of Endometrial Adenocarcinoma? This is determined after surgery when the pathologists examine the uterus or any other organs that were removed during the hysterectomy.

How are you feeling today? Your mother has wonderful children and your dad to help her out.

I had vaginal bleeding in Nov. 22 after being in menopause for 4 years. My gyn. did an ultrasound and it showed fibroids and polyps. He did a D&C on December 29th, 2022. I was diagnosed with endometrial carcinoma grade 1 as well as complex endometrial hyperplasia with atypia within an endometrial polyp. My complete hysterectomy will be scheduled soon. I have extreme anxiety because I read too much and worry too much. It seems like it is all I can think about day and night. I have one daughter and she just had a little boy. I also have a history of a blood clot so am at risk for that. I don't know what to eat because I read certain foods raise your estrogen levels. I can't sleep because my thoughts lead to thinking the worst. I read that I will have a belly pooch after the surgery and I already have belly fat. I am 210 lbs now and can't imagine gaining anymore weight. I am trying to eat better and exercise but the weight is hard to take off and the stress isn't helping.

I had vaginal bleeding for 14 months before a 2nd endometrial biopsy returned adenocarcinoma , also grade 1. Grade 1 means it is the least aggressive. I had concerns about surgery and anesthesia because of chronic bronchitis. I reported to the hospital at 7:45 am on Dec. 7th for Cavinci robotic surgery for complete hysterectomy and by 3:30 pm I was home relaxing in my recliner chair. ( which I slept in for the first 4 nights. ) Even after all this time my cancer had not escaped the uterus so lymph nodes did not have to be removed and no further treatment such as chemo or radiation was required. We consider this outcome our Christmas miracle. My pain was managed with extra strength ibuprofen and Tylenol and slight queasiness with ginger snaps. I used Colace stool softener to help with uncomfortable bowel movements. The first week is no walk in the park but each day got better and better. I hope you do as well as I did. God bless you! Keep me posted on your prognosis.

@kristysue Thank goodness you got yourself to your doctor after you found post-menopausal bleeding. By doing that the results of your D&C show that it's likely the doctor caught the endometrial adenocarcinoma Grade 1 very early. ( do I have your diagnosis correct along with the endometrial hyperplasia with atypia?). This is very much like how I was diagnosed. When I discovered the vaginal bleeding (I'd been more than 10 years post-menopasual at that point in time) I got in to see my gynecologist quickly. I was stunned with the diagnosis that I received after the D&C. I spent a weekend in utter anxiety until my oncology appointments were actually scheduled.

Unless your doctor recommends changing your diet because of estrogen levels you might not need to do that. The history of blood clots is something to let the Gyn-oncologist know as they will want a complete medical history.

Ask your surgeon about a "belly pouch" and the type of hysterectomy that she or he recommends. My hysterectomy was laparoscopic and so I had just 5 tiny incisions in my abdomen. I did not have a belly pouch after the hysterectomy.

Exercise is good no matter what. Exercise will definitely help with the stress. Can you get outside and walk? If it's too icy or cold where you live would you like to walk indoors in a mall or a gym? Walking is great exercise.

When you are scheduled for the appointment with the oncologist be sure to ask your daughter, your spouse, or a close friend to go with you. It's really hard to listen when you are so very stressed. I wrote down my questions ahead of time and my partner took notes for me. That way with two sets of ears we were able to follow what the oncology surgeon recommended and said to me.

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.

@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?

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...