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Uterine/Endometrial Cancer

Introduction: Getting Started with the Uterine Board - Updated 4/12/2022
You've found your way here because you or a loved one either has uterine cancer or there are initial indications that cancer might explain the symptoms now being experienced. This Board is a good place to learn more about what you can expect as there are initial appointments with doctors, tests, test results, and if…
Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
Uterine Board Frequently Asked Questions (FAQ) and Other Information - Updated 4/12/2022
While any member can create a new forum topic or respond to an existing topic, this page was created to provide members with quick links to certain posts on topics that others have found useful or informative. It also includes links to outside references and help on using certain features of this site. Here are the main…
Newly Diagnosis Endometrial Adenocarcinoma
I am 61 y/o and a mother of 3 wonderful grown children. I had been having some postmenopausal bleeding, and my ultrasound showed an endometrial stripe of 19 mm. My primary doctor referred me to a GYN doctor who completed an endometrial biopsy. Yesterday, I received a call from the GYN doctor stating the biopsy was positive…
Looking for comments about Jemperli/dostarlimab
I am a 73-year-old female, diagnosed with an aggressive form of endometrial cancer (EC), type IIIC1 dMMR. I had a complete hysterectomy last fall with no obvious signs of spread to nearby organs but did have one lymph node show microsized cancer cells. I've since received 7 infusions of Jemperli (6 infusions with paxitaxil…
Annual checkups
I am right at 6 years post surgery and almost 6 years from the end of chemo, and brachytherapy with no recurrence. I still go for annual checkups with my oncology GYN. How many of you continue to do this? I really love my Dr but she is retiring at the end of December. I will still go to the same oncology center and the PA…
Chemo Teaching
Had my chemo teaching today…and of course one of the most important things is to eat… Any suggestions that worked well for y’all? I’m extremely overwhelmed!! How about mouth sores? Anyone prescribed Letrozole? This was something that my doctor may want to add to my plan.
My Welcome
Just turned 50 this year and went to the ER for a pain in my left shoulder thinking I had something going on with my heart. After the CT scan, come to find out all was good with my heart but found a 9cm mass in my pelvic area. Next came the Ultrasound and MRI. Then the appointment with a Gynecology Oncologist and a full…
Newly diagnosed with clear cell uterine cancer
Hi, My sister was just diagnosed with clear cell uterine cancer. She just got the biopsy results yesterday. She will be meeting with two oncologists this week. Can anyone help with a list of questions to ask the oncologist? She is totally overwhelmed and needs some help right now. (I am her brother, I also have a very…
Is it possible to be told you don’t have cancer without a biopsy?
The gynecologist oncologist that I saw today told me that I do not have cancer. My regular gyno could not get a good sample with an EMB so he had referred me to this GO, thinking he could do a frozen section D&C. But instead, he told me flat out that I do not have cancer and that bleeding is most of the time not cancer.…
Stage IVB endometrial adenocarcinoma.
I was diagnosed with Stage 4B metastatic endocervical adenocarcinoma in January of this year, surgery/hysterectomy not an option. I have done 2 rounds (6) infusions of chemo. 25 external radiation treatments, and 3 HDR brachytherapy treatments. I'm 43 with 3 grown children and 2 grandchildren. I have hit the stage of post…
Skin care/household products after cancer treatment
Has anyone switched up their skin care and household products? I'm trying to get better about using cleaner products to help reduce the chemicals, if possible. I have very sensitive skin so it takes awhile to switch. My daughter got on me about some of the things I was using, and she was right. Anyway, I switched body…
Uterine cancer symptoms
As I've posted before, my 78 year old mom was diagnosed with uterine cancer in January. Her only symptom was vaginal bleeding, similar to a period. I was wondering what other symptoms some of the other "maturer" women had. My mom had not been to a gyn in about 11-12 years and I feel a little guilty about not insisting she…
Uterine papillary serous carcinoma
I was diagnosed with USPC in August 2024. Had total hysterectomy (stage 1b, no metastasis or lymph node involvement). I have had 3 rounds of taxol/carboplatin and should be starting external radiation after first of year. Other than neuropathy and some short term muscle pains, I handled the first three rounds of chemo ok.…
Ureter Stents - My experience
Hello Everyone! Just thought I put a post out there because recently I have noticed that more and more of you are required or in need of a ureter stent so I thought I would share my experience with you. My experience with this started in February of 2014 when my CT Scan showed that I had moderate left-side hydronephrosis.…
Lung Mets
Has anyone been diagnosed with lung metastases ? I am stage 3C serous. They only do scans once a year here for some reason. I had some bleeding that they shrugged off and then my next visit they tried to but I basically insisted on a scan. The scan in December showed no issues in abdominial region, but found a new 6mm…
Endometriod Adenocarcinoma Recurrance to the liver
Hi everyone. It’s been a good long while since posting here. I was diagnosed with endometriod adinocarcinoma Stage 1 Grade 1A eight years ago in 2017. That May, I had a complete, Davinci robot assisted, hysterectomy. I remained NED for 6 years. It wasn’t until we went 1 year in between checkups that it was discovered that…
Post vaginal brachytherapy side effects
Diagnosed with stage 1a after total hysterectomy and will meet with radiologist next week. I was told it is up to me if I want to do further treatment as my pathology was very clean. I would be interested in any potential side effects that you may have experienced with this therapy. The limiting factor is my age (68);…
Newly diagnosed Stage III 1A
My daughter-in-law (M) was diagnosed with endometrioid adenocarcinoma after finding it in her ovary and fallopian tube while undergoing infertility treatments. My son, her husband, is a testicular cancer survivor (he also had stage 3 cancer). We are beginning this awful journey once again and these boards and advice from…
Endometrial SEROUS carcinoma
I was diagnosed with endometrial serous carcinoma 10/21. I had a total hysterectomy, chemotherapy, and brachytherapy ending 6/22. I had a CT and PET scan 7/23 which showed cancer recurring in the retroperitoneal lymph nodes. I have my last radiation treatment today (total of 28) and am wondering if there's anyone else on…
11.4 mm endometrium and worried
Hi everyone. I'm glad there are platforms like these to sound off on. I hope it's ok to post here although undiagnosed. I've been reading around and found some helpful posts. Ultimately, we just have to get checked the best we can and not take diagnosis online. I understand that. Purpose of this post, is to hear your…
Thick Lining
Almost 52 over 2 years post menopausal and have been bleeding very infrequently until about 5 months ago. It comes and goes . Sometimes clear discharge, brown, red, etc and usually light. sometimes when i urinate i do have some discharge (assuming some lining). The last 4-6 weeks i had period type cramps in lower…
MRI guided surgery and Endo Ablation
I have my first appt with a gynecologist oncologist today and have been researching alternatives to hysterectomy for fibroids. I am post menopausal so if the doctor is adamant about that route, I’m fine with it. However, I’m wondering if anyone has ever had MRI guided surgery that is apparently non-invasive and destroys…
Success with dostarlimab immunotherapy for uterine cancer with mismatch repair mutations
https://www.nytimes.com/2025/04/27/health/cancer-immunotherapy-solid-tumors.html?unlocked_article_code=1.C08.fnfM.3jbPvxka1eGQ&smid=url-share Free link to NYT article. It is showing excellent results in other solid tumors, too. It's approved for uterine cancer with mismatch repair mutations, and in trial for certain other…
Cramps and Waiting for Biopsy
I am scheduled for a biopsy and SIS in about a week due to post menopausal bleeding. The doc prescribed Medoxyprogesterone to stop the bleeding. However, I started experiencing lower pelvic cramps a few days ago, that oddly starting late morning and going on until I go to sleep. When I was bleeding, it also tended to be…
UPSC survivor 15 years NED
I had USPC in 2010 and remain cancer free after 15 years. I had 6 rounds of chemo and brachytherapy. Other than screwing up my vagina with the brachytherapy ( it is not a straight tunnel any more) I am doing well. Having sex at 74 is still great even if it involes lube and vibrator stimulation. There was another lady that…
Looking for others who may be survivors of leiomyoscarcoma of the uterus.
Hi... I was diagnosed with leiomyoscarcoma of the uterus in Sept of 2010. I had a complete hysterectomy, then 28 treatments of radiation to the pelvis. I know it's aggressive and that the statistics for survival is not good. Looking for others in the same situations.
First chemotherapy treatment today
UPSC - Any survivors greater than 5years?
Hello Fellow UPSC sisters.. I would like to start a discussion on looking at recurrance rates and survival from the USPC group. This may sound depressing, but I think it would be positive to put light on this "Rare Agressive Cancer". I had surgery (TAH + BSO and pelvic node clearance Aug 2010). Surgical staging IIIC. (Node…
Nine years later recurrance in lung
I had stage 1a grade 1 endometrial cancer 9 years ago. I had a full radical hysterectomy, and the Dr.s felt there was virtually no chance it would return. No chemo or radiation was suggested or offered. Nine years later I started to cough blood and after loads of tests, it has been determined that I have an endometrail…
Has anyone heard from CMB?
I have not heard from CMB in a very long time. I hope she is okay.
Emotionally struggling, looking for suggestions
Sorry, this is a long post… I just had a radical hysterectomy on 1/21/25 after having had a biopsy on 12/27/24 that showed some cells that suggested endometrial adenocarcinoma. The final pathology found the tumor provided a diagnosis of FIGO Stage 1A2. While I am 41yo, my logical brain is what said to do the radical…
Just diagnosed - Endometrial Adenocarcinoma Endometrioid - FIGO grade 1
Hi everyone, I was just diagnosed with Endometrial Adenocarcinoma - Endometrioid type - FIGO grade 1 P16 and P53 wild type stains) on 2/28. Have appointment with Oncologist on March 10th. Seems like years away after cancer diagnosis. I have had very heavy period since November 29th. Nobody should have to have a period this…

Uterine/Endometrial Cancer

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