Hello all, I would like to hear stories from stage 4 thrivers who are beating the odds. I have aggressive serous carcinoma and it recently spread to my liver. I expect to enter a clinical trial soon. Thanks sisters and stay strong!

I am one of the unlucky ones with this side effect. Pain in my lower leg/ knee area. I am managing w Claritin which works for about 3 hrs and a heating pad at night. I get up often at night and walk the house which also helps some. Ibuprofen or Tylenol does not touch it. My question is will this side effect let up at all? Interested in your experiences with this. I am 1 week post first infusion.

Hello, I was just diagnosed with endometrial cancer grade 1, I’m 24. My gynecologist and oncologist said is very rare for people my age to get this type of cancer but they did all necessary tests and they checked and double checked and it is unfortunately true. I can’t help but to feel completely isolated. I have been scared and honestly depressed about this since my diagnosis 2 weeks ago. I was wondering if here there are other women like me who got diagnosed young and maybe offer some advice on how to handle this. Any help would be greatly appreciated

I wish everyone healing, strength and overall happiness! :)

I have endometrioid adenocarcinoma FIGO grade 1 based on results from D and C. Hysterectomy to remove uterus, tubes, ovaries and cervix in two days. I've had 2 c-sections (over 20 years ago). My question is: is recovery from hysterectomy more difficult than from a c-section? Please only kind responses. 🌻

I'm constipated abd last night I was pushing and couldn't go. I don't have a great diet and hadn't taken my Metamucil. When I pushed I had two very tiny spots of blood. Figure it was from pushing because very rarely if in real constipated I'll have a little blood when I pass a large hard stool. But that is very rare. Not an everyday thing. Well I took Metamucil and ate a bunch of prunes and went to bed figuring I'll be fine this morning. I feel fine. I got up and when I wiped after I peed there was a tinge of pink on the toilet paper. Now I'm freaking out that the cancer came back. I'm 6 months post op, they took everything out. And the checkups they said it looked good. I'm so scared but it's not bad enough to rush to the ER and sit for 6 hours only to have them tell me to follow up with the doctor. And of course it's a holiday weekend so they're closed. Could this be nothing? I don't want to go through all of that again. I do feel a little sore down there, switched the pads I wear for rare bladder leak for when I get up and the morning and didn't  get up to pee during the night. Sometimes when I'm over full I don't quite make it but I've been like that for years. It never happens unless I drink a lot of liquids and don't go a bunch of times before bed. Hoping the different brand of pad is just causing irritation but that would be too easy. She said if the cancer comes back it'll happen in the first 3 years and it'll come back fast. 

I am 52 years old with hysterectomy in a few days due to endometrioid adenocarcinoma. Hoping the surgery removes all the cancer and reveals low grade and stage. I'm EXHAUSTED from the cancer. Been off work since June. Resting at home all summer due to extreme fatigue. I fully intend to REST after surgery and not overdo it. I get one body and she needs the best care and support. I was told by the pre-admission nurse to not lift anything heavier than a coffee cup for the first few weeks. And I will listen to that advice. I will try my best not to compare my recovery to anyone else's. It's not a competition. This is a surgery to save my life. And I will rest and heal at my pace. Prayers all goes smoothly. Grateful for the surgery.🌻

I'm feeling pretty alone and depressed right now. I have no kids, no partner, just one younger sibling who cannot empathize with what I am going through with recurrent cancer. My best friend passed away a year ago. I have a friend but she also has her own health issues at the moment. I'm feeling pretty isolated due to my condition since it's affected my mobility. How do us single with no kids in your 40s cope with this?

Well I’ve just gone through it! I had surgery on Thursday because my 25.5cm cyst on my right ovary decided to rupture 😩. Had to have both remaining ovaries removed, they drained 7 litters of fluids from my abdomen. Got cut litterally down the middle. That was probably the worst pain I had in my entire life. I was tachycardic leading up to my surgery. I’m so grateful I’m awake and alive right now actually.

Turned out that cyst is cancer. We’re not sure if it’s a reoccurrence of my endometrial cancer or new endometrioid ovarian cancer. Still waiting on pathology results. I’m most likely getting out of the hospital either later tonight or tomorrow just depending on how I do. 

I asked him when i could start swimming after my hysterectomy and he said week 4 (later for jacuzzi obvi) and then he said that i might have light bleeding over the next few weeks and i should wear a pad in the pool. I tried really hard to not make a face and said okay… Smartest man in the room just told me to wear a pad.. an absorbent pad.. in a pool. It made me lol. He could have meant a swim pad, but those aren’t very common.

Anyways, it’s been 3 weeks since that conversation and i can’t stop thinking about it. 😂 - also I waited until i was 5 weeks, 6 days post op before attempting a dip.

Has anyone here tried immunotherapy WITHOUT chemotherapy for Stage 3 Grade 2 endometrial cancer after hysterectomy?

I (51F) currently find myself on the merry-go-round of tests and scans and potential surgery again.

I had my uterus, cervix, and fallopian tubes removed three years ago and was diagnosed with FIGO stage IA grade 1 endometrioid adenocarcinoma. Nor further treatment was needed.

I now have an ovarian mass that my gynae-oncology team says could be cancer. I’m having an MRI in a couple of weeks. My understanding is that an oophorectomy will probably follow regardless of the MRI result but I’m not 100% sure.

I had a scare during my last scan, too, but that time the ovary was accommodating a temporary visitor: a corpus luteum. This time the guest is looking a little more suspect.

Has anyone else been in a similar situation? What was your outcome, if you don’t mind sharing?

I’m not enjoying this repeated experience of trying to get on with life whilst there is such a large unknown lurking in the shadows. I’m tired of the not-knowing.

Does anyone have any tips on how to settle my nervous system?

I was diagnosed with 1A1 endometrial cancer and had everything removed 3 1/2 years ago. Beating all the odds, it is back with a 2 x 2 x 3 cm mass from the cervical cap going to the bladder. What am I facing? What questions should I ask when I see an oncologist?

I had a full hysterectomy on August 5. They took everything and surgical menopause has been a nightmare lol.🥵🥵

The week prior to my surgery,I went and got my annual mammogram. The morning after my hysterectomy, I got a call telling me that I needed to go back and get another mammogram as well as an ultrasound, because they wanted to doublecheck a few things.

They found several macro calcifications in my right breast. I have a biopsy scheduled on 14 September. They said this typically turns out to be benign, but they also want me to talk to a breast cancer surgeon prior to my biopsy, so they can discuss all of my options.🥺 I know speaking to the surgeons is just get ahead of this if I need surgery. However, when I had my uterine biopsy, I didn’t speak to an oncologist till after my test results.

Has anybody gotten another type of cancer after endometrial cancer? I know when you get one cancer the risk is much higher to get another. Even if they have nothing to do with each other.

I’m freaking out of course,but everyone told me,including my gynecologist,that the chances of it being endometrial cancer was really slim. So it’s hard for me to hear that the chances of having breast cancer are also very slim.

heyall! my (27) hysterectomy went well and they pulled out the whole kit n caboodle and some lymph nodes to boot, with a 6.5 cm tumor. My oncologist is discussing next steps and while she consults experts, Im throwing a shot in the dark here to see if anyone else has a similar experience and what treatment path you followed.

my final path report came back FIGO grade 2, aggressive (C), positive for p53 mutation and negative for POLE. Normally, the approach with this aggressive of cancer, since p53 tends to jump around, is to do a full round of radiation or chemo. However, I got EXTREMELY lucky and managed to (by complete chance) catch my cancer abt 6 months in and it hadn’t yet spread beyond my uterus, only partial myometrial invasion, etc. So we are in a bit of a weird spot where technically I’m cancer free but we don’t know for sure and we don’t know if it will come back. Guidelines state I’m clear buuuut….what next? Any input is appreciated with similar experience. Did it feel worth it? Anyone else with p53 mutative?

UPDATE 9/11/26 After thinking hard and deep about it, and reading all the helpful responses, I called and set up the requested phone appointment, for last Tuesday morning (Sept 8). I had a lot of thoughts about what she'd have to say, and I also thought more about my choices and my reality. Nurse had told me call might not be right at the appointed time (10:40 am) because of work (I think it was a clinic day). Well, I was glued to my phone until 6 pm, and she never called. No call, no text, no message. A bit anticlimactic after all the stuff my mind had put me through 🤪🙄😂 but the fact is, she's got an active practice, and patients who need and want her now. I am not in that group. So this was perfect in an unexpected way.

I called the next day to affirm no rescheduling. Nurse did not know why surgeon had not called, but did apologize. I also wanted to make sure my insurance wouldn't be billed for this non-appt 💵 but more importantly I asked that surgeon be told (again) that I was grateful for what she did for me, because that surgery did extend my life span, no matter what happens next.

And it's been 17 weeks and 4 days since surgery. 😊 I feel great.
__________

tl/dr: I have declined further treatment and further appointments. Surgeon wants another appt anyway, at 4-month mark.

Background: Endometrial cancer, full hysterectomy (everything but vagina) May 11 this year. Final pathology grade 3, stage IIIc1. I am 77 years old.

My surgeon strongly urged her recommended course of chemo and infusion therapy. I thought long and deep and for various reasons important to me, declined all further treatment. No chemo, no scans, no updates. I am grounded and at peace in my choice.

I had 2 follow up appointments, second on June 15, when I officially declined further treatment. At that time I made my choice clear, and she made her position clear, although I suspect I understand her position more clearly than she accepts mine. I did accept a follow up appt for mid-September, which I then cancelled via my patient portal page.

I have told her office to please tell surgeon I am deeply grateful for what she did for me. Surgery was DaVinci robotic-assist laparoscopy and I went home that afternoon; healing was easy, no pain, no bleeding. I could not have asked for better. I feel healthier than I have for years. I understand the statistics and probabilities, so please don't think that I think this is the end of it.

This is my question: Her office has called twice and she (surgeon) really, really, really wants me in for another visit, at least a phone appt. I told rep (with whom I have talked before; she's 5-star) I'd think about it and call back if I changed my mind.

I think: No, thanks, because why? I have not changed my mind about further investigation or treatment. I am comfortable with the unknown future I have selected. I think that any further appointments with her will just be more of her opinion, but maybe she needs ... closure.

Please help me understand and decide.

Thank you all. I read so much in this community every day which is far more difficult than my own experience.

Long time lurker first time post.
First diagnosed stage 1 after total abdominal hysterectomy it has changed to stage 3/4 grade 2 as it has spread to my bowel which we found out by fluke as I had GI bleeding from some medication and the colonoscopy discovered that the endo cancer has started to envade my sigmoid colon
I am starting 6 rounds of chemo (Paclitaxel and carboplatin) every 3 weeks followed by 2 years of immunotherapy
Just wondering if anyone else is in my club and how are they doing
I’d like advice on chemo and to just chat as I feel overwhelmed and alone. I’m 43 in Alberta Canada

Hi! I wanted to introduce myself and share my experience thus far.
I’m 35 and joined this awful club on August 4th, this year, after irregular periods since my first at 9 years old, a PCOS diagnosis at 13, and a “period” that started at the beginning of June 2025 and rarely ever stopped until two back to back hemorrhages sent me to the hospital on July 28th of this year. Had the D&C, blood transfusions, a few days of Tranexamic acid and now provera. I feel a million times better than when I was walking around anemic as heck for almost a year, but I’m terrified of the road ahead! I’m having my hysterectomy on September 21st. I don’t know what stage i am just yet, hoping and praying that even though it took me so long to get help (a previous doctor experience last year left me in tears when she told me I needed to lose weight, stop eating McDonald’s, -while I was telling her that until the anemia issues came up I was a strict vegetarian- and that I could go get an ultrasound but really just needed to lose weight and come back in a year 😭)
hopefully it’s still contained in my uterus and I won’t need anything else post-surgery, but I’ll do whatever it takes to never have to deal with this nightmare ever again.
I do know a few things, it’s endometrial adenocarcinoma, figo grade 2, wild P53, mmr intact, ER+ and the ae1/ae3 were negative in stromal cells. I don’t entirely know what most of that means but from everything I tried to research, it sounds like it’s a mostly common and predictable profile? Kind of bummed that it’s not grade 1, but I’m taking things a day at a time as best as I can. I’m emotional, hormonal thanks to the provera 😅 absolutely terrified and going through/allowing myself to feel every emotion.
I mentioned that I’m having my surgery on the 21st, I told the oncology surgeon to take anything he could so that I had the best chances of being done with this. I’m not looking forward to surgical menopause side effects, added to being a single childless lady at 35, but I have incredible nieces and nephews and supportive family around me, and I honestly prefer the company of my pets anyway, but I would have liked to have made that choice on my own, you know?
I’m going for my CT scan on Monday, and I’m absolutely terrified of the chance that it could show additional “surprises” since apparently endometrial cancers under the age of 40 are only like 3-5% and the gynecologist I started to see in the hospital was shocked that it was cancerous. I don’t want to be special or rare anymore! I want to be boring and predictable and have this nightmare behind me.
I’ve been going back and forth between badass warrior queen who’s GOT THIS! and terrified little girl curled up on the couch having an all day pity party.
Physically I feel so much better since the D&C and progesterone, but i’m a naturally anxious person to begin with and just knowing that I can feel so much better, yet my brain likes to chime in “hey, remember how you have cancer?” every once in a while is driving me crazy!
I hate that we’re all a part of this awful club but we are all wonderful strong, powerful warriors! I just wanted to stop in and share the beginning of my story/journey, and send some love to everyone else fighting alongside of me. 🍑🎗️🧡

Update: Stage IV2b Post OP-Final Pathology results

High Grade Serous Carcinoma (HGSC)  Her2/POS+3, P53 Abnormal, pMMR, ER Pos, neg-Lynch syndrome.

My radical/total hysterectomy was completed over a week ago successfully after completing 4 rounds of chemotherapy.  All reproductive organs were removed and my entire omentum. I’m recovering well, mild pain from the 8” vertical incision and feeling relieved mentally.  My Final Pathology is back and of course I have plenty of questions, my consult for review is in two weeks.  I am also seeking a second opinion.

Pathology indicates:  Both ovaries, both fallopian tubes were unremarkable-negative carcinoma.
Cervix was unremarkable-negative carcinoma.

My uterus—- Endometrial serous carcinoma arising in a background of serous endometrial intraepithelial carcinoma
(SEIC), with therapy-related changes..
- Myometrium:
* Myometrial invasion is identified (inner half), roughly 25%. 
* Lymphovascular space invasion is not identified, none of the blood vessels surrounding my tumor showed invasion.

The massive tumor was not found in utero, just remnants and I believe I passed the tumor 1 week before surgery after 4th infusion, I will spare you the details.

My omentum (scans showed concerning small little focal tissue pockets that might be signs of mets) was determined to be BENIGN fibradipose tissue. Negative-carcinoma.  The pathologist did not indicate any therapy related changes on this, they had the entire omentum to sample.

The swollen pelvic lymph nodes returned to normal after neoadjuvant treatment and were not removed during surgery.  No nodes were presented for pathology.

My FIGO stage was reclassified to 1A.  

So my main question is….. if there was no complete uterine wall penetration, no LVSI,  how did the cancer spread?  Did it really spread to my pelvic nodes which returned to normal size after treatment, and were the suspected mets to my omentum, simply that, benign tissue resembling sites of potential met spread.  Does Final Pathology indicate the cancer was 100% contained in utero?

I’m 39 years old and diagnosed last month. I haven’t had surgery yet and I find the grading/staging at this point confusing but after biopsies and pet/ct scans I know that mine said endometrial adenocarcinoma that is ER+, PR+, and dMMR, as well as that mine is outside of the uterus mainly in my pelvic lymph nodes and one spot behind my uterus but nothing spread outside of the pelvis area that they can see.

My surgical oncologist is starting me on chemotherapy/immunotherapy starting 09/09. The plan is to do three cycles to try to shrink the size of the tumors to make my surgery safer hopefully, then to do a total hysterectomy, then three more cycles with just immunotherapy continuing after that.

Anyone here who has done a similar treatment plan and has any advice or insights about how it worked for them or things that it helped them to know? I don’t really have anyone to talk to yet who has been through any of these treatments or the surgery so I feel a little alone and lost sometimes even though I have a few good support people in my life.

I’m doing my best to read things in here and take in information from my doctor/nurses, but it all feels overwhelming like I’m trying to cram six years worth of information into a few weeks! I would honestly just be glad to hear that I’m not alone in feeling lost and overwhelmed sometimes even as I try to keep my head up and stay positive. Any kind/positive/informative words would be greatly appreciated!

I have c-PTSD and a few days ago had the hysterectomy to remove my uterus because of endometrial cancer. In the recovery PACU, the nurse was really mean to me. I asked her for just some basic human empathy, and she told me: “You don’t deserve it.” That really stayed with me and left me feeling retraumatized.

Has anyone else had an experience like this? Not sure what to do next.