r/endometrialcancer

Hey guys, so I’m finally scheduled for surgery next week. Total hyst with bilateral salpingo-oophorectomy. CT didn’t show any metastases, but there are a few slightly enlarged lymph nodes. I’m sooo nervous about going into immediate menopause. My onc said people my age (mid 40s) sometimes don’t have crazy symptoms from it, and because I have a history of blood clots, she recommended to wait and see how I feel before starting estrogen. I’m curious to hear about other experiences with surgical menopause, do we suddenly look and feel like we’re 80 years old? I know my fear probably isn’t rational or realistic, but I am terrified all the same. Does HRT really work for people? And have people been having a hard time actually getting their HRT? Also which form works the best? Thanks all :)

Hi everyone, I just found out I had endometrial adenocarcinoma and was to shock to even react. I’m really scared but I’m happy I found out soon than later 😔

Because so far I’m having the opposite. I tried to go to bed early because I was tired from the whole ordeal, mostly from stress and traffic problems. I couldn’t get to sleep and when I finally did, I woke up every half hour to hour all night long! I’d roll over and look at the clock exotic to be hours later and it was only a half hour or hour later. Seems like it caused insomnia instead. Anyone else?

Why in the world do people tell cancer patients about someone they know who died or is dying from it? Why? Was on my way to brachytherapy and said to the maintenance man that I was in my way to radiation after he asked how I was doing. Then proceeding to tell me about his young cousin who has cancer and isn’t doing well and probably won’t make it through the year. As I’m heading for treatment! Good grief just say you’re happy I’m feeling better.

That’s what it says online about how much to drink. If I drank that much is never leave the bathroom. My oncologist, techs and nurse said nothing about drinking more water and I forgot to ask. I did remember to ask about the cranberry pills and he said only if I notice irritation burning. But nothing about water and I just went back through the huge list in MyChart about everything having to do with this and it only says to drink 8 one cup glasses of water if I get diarrhea. I wonder why they didn’t mention it.

I was diagnosed with syncronous endometrial and ovarian cancers in 2023. They were both low grade and stage, endometrioid adenocarcinoma, estrogen +. I had a total hysterectomy and bso, 20 lympnodes removed, and part of my colon in 2024. I have only ever had surgery, no radiation or chemo. It took about a year to feel normal and have energy again. So every 3 months i see my oncologist and have a ca125 test. My numbers have gone up and down but never over 21 since surgery. Its 14 right now and 14 last test. Ive felt pretty good but recently within the last few months ive been getting a very sharp stabbing pain in my pelvis and vagina. Its either there and gone as soon as it happens or it lasts a few seconds and then gone. It takes my breath away everytime it happens. I keep feeling like im about to start my period, you know that heavy feeling, like its about to "drop down." Or like that feeling when youre on your period and think your butts wet, that feeling too. No spotting, no discharge, no blood. This morning i woke up and turned my head to check the time and had the worst vertigo ive had in 2 years. One of the symptoms i had before diagnosis was really bad vertigo. Has anyone had these symptoms and its nothing? Its been happening off and on since December but its becoming more regular. I brought it up my last visit and she just said to keep an eye on it.

I am 35 and had a hysterectomy in December for Stage 1 Grade 1 endometrial cancer (no myoinvasion). My gyn onc recommended I keep my ovaries because studies show mortality is lower in pre-menopausal women with early stage/low grade endometrial cancer who do so compared to women who have them removed. In February, I had hot flashes but assumed my ovaries were just waking up. In March and April, everything was normal.

However, the past week or so I’ve been experience insane hot flashes and sore breasts, in addition to dry skin. I have a follow up appointment with my gyn onc in early August. Should I just wait until then to make an appointment?

Nothing like what I thought and we were out of there before the time of the second one. We got there over a half hour early so they took me early. They did everything in the room they did the cat scan in. Did a quick scan, then put the rod in and did a quick scan, took it out. Had to go sit in the waiting room. She said said go wait in the waiting room for 45 minutes but it was more like a half hour. Took me back and put the rod in again and did another quick scan to make sure it was placed right. Then a lady came in and ran a divice over me real quick to make sure I wasn’t already radioactive. Then she hooked a tiny wire to the rod and left for 3 minutes. Came back in and ran the divide to make sure I wasn’t radio active. Doctor came back in and took the rod out and I was done. Easy peasy. The next 3 appointments will only take a few minutes. Got there fine until we got a little lost trying to find their private free parking lot. But on the way home, OMG it took forever because of the detour for a main road’s construction. Sat in traffic forever not moving. It was awful. It took way longer to get home than the whole procedure.

I have the first of 4 appointments over the next two weeks for brachytherapy. I’m really nervous especially about the first one. I know they said I’d be there for 2 hours, but the MyChart app said it was only 60 minutes. Then suddenly it shows a second appointment for the same day and hour later that wants me to do an e-check in for both. I sent them a message about why there is 2 appointments at different times for the same day, thinking they changed the appointment time or it was a mistake, but haven’t heard back yet. Could it be 2 different appointments in the same day? They never mentioned it when we discussed what was coming up.

My oncologist is putting me on cabozantinib & temozolomide. I have stage 4 endometrial stromal sarcoma with mets to my lung, lymph nodes & spleen. When i had done doxorubicin, it shrunk all my tumors tremendously & then i went on a break for a few months because i ended up getting heart failure from that chemo. After a few months, my scans showed the lymph nodes were growing again so i was put on gem/tax which didn’t work. The tumor in my lung has since grown more & i had to have a stent put in.

Has anyone had experience with taking cabozantinib + temozolomide? I haven’t seen any posts about using this drug combo & for my specific cancer. I’m 34(f) & trying to living a normal life as best as i can. I have more bad days than good even while being on a break from chemo since March. I’m nervous this drug combo will make me feel terrible.

Just wanted to post my (almost) full story here in case there is anyone going through something similar. I hope nothing I say triggers fears. We’re all different. There were stories I read on here that I really hoped would be mine and then weren’t, but so far I’m doing okay on my own journey. 

Symptoms: Red flag symptoms started about a year before my hysterectomy. For about 3-4 months my period would go like this: normal for 5 days, then maybe a day of no bleed, then start up again heavy bleeding for 10-14 days with large and new to me clots. Then a couple days no bleed, then spotting, then period would start again. I noticed very little cramping with all the extra bleeding, wasn’t in a lot of pain, felt like I was maybe anemic, felt lightheaded, but never had an abnormal CBC (although I didn’t have any blood tests during the height of my symptoms). Activity levels were normal. This was occurring between June-September, and symptoms decreased right around the time I made my first appointment. 

Had watery discharge for years before this came up, and I was found to have bacterial vaginosis during testing before my hysterectomy. Really not sure if that has anything to do  with the cancer. My doctor didn’t say it was related. I also had a random 2-week period when I was I think 38 (five years before hysterectomy). After this I noticed I was regularly spotting between periods, and I just assumed that was my normal. Saw a doctor for that and she didn’t make a big deal of it, didn’t order any tests. I wonder if that was the beginning of the AH/EIN, but who knows. So in total of possible symptoms I had 10-ish years watery discharge (may not be related, but since it’s a commonly noted symptom), five years spotting, one year with 3-4 months of 10-14 day periods with heavy bleeding, minimal cramping, and large, weird clots.

First steps: made an appointment with primary doctor in October. I didn’t have an established primary doctor when this was all going on, which slowed me down a little bit. I might have tried to make an appointment earlier otherwise. Told the doctor about my family history of fibroids and hysterectomy. Doctor sent me to get an ultrasound. Ultrasound showed 4 cm mass, thickening of endometrial stripe, and nothing else. Made appointment with gyno who reassured me that it was a benign fibroid, and we discussed myomectomy and hysterectomy options.

At this time I was pretty convinced I was just bleeding extra because of perimenopause and didn’t feel strongly about removing the mass. Gyno sent me to do an MRI I think to try and look for signs of cancer/precancer. MRI came back showing mostly what the US showed: mass invading myometrium less than 50%, likely to be a polyp or neoplasia.

Gyno offered to do either an endometrial biopsy or hysteroscopic myomectomy. Initially, after talking to a nurse in his office who said some scary things to me about how they couldn’t rule out cancer from the MRI, I asked for the biopsy, but after messaging with the doctor, he really encouraged me to get the mass removed. He didn’t see strong indications of it being precancerous or cancer, but it was going to have to come out and be biopsied at some point. So I got the myomectomy end of February.

Precancer: Pathology from my mass showed AH/EIN and focal areas “bordering on” well-differentiated endometrioid adenocarcinoma. I still can’t express how crushing this was. Thinking about it now I want to cry. My heart goes out to anyone who thought they had a benign condition and then finds this; to anyone whose doctor was “really surprised.” And from what I’ve read on here, it happens A Lot. In a way, I suppose that’s what happens to everyone.  Nothing against the doctor. I needed that extra nudge to get it removed, and his note about thinking it wasn’t cancerous took some of the emotional weight off of deciding to do the myomectomy.

Next steps were then blood work for cancer antigens. My ovarian cancer antigens (CA 125) were elevated, but my doctor told me that this is common for premenopausal people, and they worry about it when I think they are over 200 or something. Mine were like 67 (If you want my specific numbers dm me or look at my earlier post). I also had a CT scan that showed no sign of metastasis.

My appointment with my Gyn Oncologist was at the beginning of April. She thought I had a 60% chance of having cancer since the “bordering on” cancer cells were found. I’m not trying to have children, so we planned the hysterectomy. It was laparoscopic robotic. Uterus, cervix, tubes, sentinel lymph nodes removed. Then during surgery a pathologist would look at the uterus to see if the mass that had been there had invaded more than 50%. If it had, they’d go back in and take out my ovaries same day. I think at that point they would have also checked the nodes and possibly have removed more lymph nodes higher up in my torso.

Surgery was May 7th. I was really worried that it would be cancelled. At my first oncology appointment, I had a pretty bad cold. The doctor said there was an opening to get the hyster done the next week, but I had to get over the cold first. And then at the beginning  of May I started to get seasonal allergies which included a cough, so I was worried we’d have to reschedule and my husband has a very busy May and… I was just so freaked out that my allergy cough would cancel the surgery. It ended up being no problem at all. Like I emailed the doctor the day before, she said I sounded fine but would be evaluated by anesthesiology, and there was zero concern day of.

Hysterectomy, from my perspective, went smoothly. They found less than 50% invasion and a nodule that was suspicious of endometrial cancer, so my post surgery diagnosis was still “bordering on” EC. I got a call from the doctor five days post op that the nodule was in fact cancer, FIGO grade 1. Invasion 20%. It’s unclear to me whether it was part of the removed mass or not. No cancer found anywhere else. I’m waiting for stage because she is I believe presenting my case to tumor board, and I think they come up with a consensus about stage at that point. But she did say no further treatment—I think. It’s like the most important things she tells me are the things I can’t remember.

So that’s where I’m at. It’s strange to go back and read this condensed version of what happened. Between every test and every result there was a gap of very painful waiting and wondering and googling, and reading reddit, and crying and despairing. So if you’re at that point and you’re reading this, the only way out is through. And you can’t know anything until the time comes, but the time will pass.

I think the moral of the story, and what I would tell myself a year ago, is you know your body the best. The internet might say you don’t fit risk factors and that this cancer is rare for people like you, or maybe it’s just perimenopause, but if you know something is wrong with your body, talk to a doctor. Even if you’re attached to being healthy, or you think you can handle your weird period, or you don’t like needles, or you don’t like being examined (these are my excuses), talk to a doctor. Even if it isn’t cancer, bleeding constantly is unacceptable. You don’t have to live that way.

I have stage 1a N0 p53 abn serous endometrial carcinoma, 5 months post surgery and one chemo left. I havw been reading good things about the ctdna tests on this sub, did some research, reached out to Natura, and found out they offer the testing up here through the life lab chain ,by prescription -not covered by Ohip, but covered by private insurance, or paid (expensive) out of pocket. I asked my Onc about it , and was i was surprised to find out that she did not think that much of it, she was borderline dismissive and made it sound like it was a waste of time? Thing is, this cancer is aggressive, recurrence is expected, and my CA 125 ( which they test every visit) is not a reliable marker , mine was well within normal and dropped only a little bit after chemo started. if this gives some advance notice of something brewing, i think it’s worth pursuing. Does anyone in Ontario do this testing? Did you encounter resistence from your Dr? How do theyhandle results? Thanks in advance…..

I was recently diagnosed with early endometrial cancer at 36 years old. None of this was where I thought it was going to end up when I begged for new tests after years of just ‘putting up with it’. But I guess that’s what everyone says when they hear it’s cancer right?

I’m still trying to wrap my head around ‘it’s highly treatable and survivable!’ and also ‘it’s fucking cancer?!’ 😭

I’m getting a hysterectomy, leaving my ovaries if all is good, a week from now and I am SO nervous. When I had my consultation appointment at first my doctor stressed on me still being young and that we could monitor it with the new IUD I had amongst my biopsy. It was kind of infuriating? Like I was looked as a baby maker first? A woman who life is completely derailed by her current health second?

A part of me struggles with ‘well is all this my fault?! Did I do something wrong?’ I don’t drink or smoke, never have. But I am overweight and it has been a struggle that I have tried against again and again… Is it my fault? 😵‍💫

The last year has been so horrible trying to manage my health. My iron is terrible, my mental health is a struggle, I am constantly in pain, my migraines are constantly multiple day attacks with severe pain. And everyday there was a chance of me completely bleeding through everything… Which I did twice in public 😭 I’m not living my life AT ALL.

I went into my appointment informed. I knew a hysterectomy was kind of ‘end goals’ regardless of timeline. I had settled with myself a while ago I didn’t want children. But it’s still daunting regardless.

I’m nervous how it will all go. How I will feel after it all. And I am terrified of what the next step will be. Whether I beat cancer through surgery or if there is a chance, through final staging, they realise I need further treatment.

Honestly I feel a bit childish, because amongst all this all I wanted was my mum… I have a strong chosen family who loves me dearly. And I would not trade that for anything but god do I just want the support of a parent to run to and cry… I have been no contact with my mum for 7 years due to an abusive childhood. But god does this all fuck with you. I was a survivor already, and now I have to add cancer survivor onto it lol

Some rambling really. Any tips for keeping sane while the hours tick down to surgery next week would be amazing. Or even how you felt and looked after yourself post-surgery… Even better if you have amazing improvement that I can hold onto as goals lol

Regardless, whether just started or post-treatments, I hope your journey is gentle with you 🧡 Hang in there

I (40f) was diagnosed with endometrial cancer grade 2 about a month ago, and am just a couple weeks away from surgery. For the most part, I haven't allowed myself to think too hard or too much about it, because I'm hoping surgery will resolve everything. But still, I can't help but worry. I was living with symptoms for upwards of 6 years until my diagnosis, because I didn't have good insurance until recently, so didn't have access to very good care. Doctors continually dismissed my concerns and just blamed my constant bleeding on my PCOS, even after I told them that usually I almost never had periods beforehand. The most that was done were pap smears, only checking my cervix for cancer, and never finding any.

Thankfully, now that I have access to better care, I have a medical team that seems to actually care about my concerns and my health, which finally lead to my diagnosis.

My surgeon ordered CT scans and an MRI to get an idea ahead of time if the cancer has spread anywhere else. And my brain has been hitching on all the what ifs and worst case scenarios. I'm afraid of having to go through chemo, if the cancer spread beyond my uterus. I'm afraid of how it's going to make me feel, and worried if it will affect my ability to effectively keep up with my job.

I'd love any advice on how those of you that already went through it and came out on the other side dealt with the anxiety and how chemo and/or radiation affected you.

Hello everyone! I'm not sure if it's best to post here or in the Menopause group, so feel free to delete this post if necessary. So, in Jan 2025 I was diagnosed with stage 3a endometrioid adenocarcinoma grade 2. I finished chemo almost a year ago and finished my external and internal radiation back in September. I'm 43 years old and menopause symptoms have been pretty mild for the most part, I only get a couple hot flashes a day, but recently I have been having the worst body aches which I'm assuming is from the menopause. I work out, try to eat as healthy as possible, but I am full of aches and pains now. Does anyone else have these issues and if so how are you dealing with it? Thanks for any suggestions!

The radiologist told me to take 2 cranberry pills during my brachytherapy. But I can’t remember if he said to take the, before or once I start treatment. I can call but I have to go through like 5 menus then get their voicemail and then wait for them to call me back. I’m pretty sure I don’t start until I start the therapy, has anyone else been told to take them and when to start and stop?

62F-post menopausal. Perplexed, stunned and feelings of disbelief after reviewing my MRI results. The language is terrifying! What I thought would be another examination of existing uterine fibroids, has now evolved to endometrial cancer--high grade serous carcinoma--and the fibroids are still there. Giving my best Ricky Gervais impression---F ME!!!

My symptoms of bleeding began in mid-Jan '26, no pain, no cramps, no fatigue, no nausea, nadda, just a heavy flow with clots for 1/2 days then tapering off to light spotting for 1-2 weeks, then back to heavy 1-2 days, the cycle repeats.

My pap smear came back abnormal for adenocarcinoma. My endometrial biospy came back high grade serous carcinoma.

My MRI results came in yesterday. I'm aghast that I have a 10cm almost 4inch tumor invading my uterine wall, extending into my cervical stroma, penetrating my lower uterine wall with possible extrauterine tissue mass abutting my bladder dome. WTH??? I cannot believe this kind of destruction has been going on symptomless till Jan '26. I'm shaking my head here. MRI lists three KNOWNS, then lots of possibilities, suspicious, probable scenarios with respect to lymph nodes, parametrial fat etc. I just want the doctor to call me and admit me to the hospital to get my hysterectomy. I'm concerned they may want to do chemo (neoadjuvant therapy) first cause of the tumor size. I hate this!!! I feel like I could jump on my motorcycle and ride 500 miles today, I don't feel bad.

CAT scan today. Will report later on this journey. Keep the faith ladies.

With endo adenocarcinoma, grade 1. Super frustrated that I have to wait 4 weeks after being diagnosed for my first gyn onc appt. Asked primary gyn and gyn onc if they recommended an MRI in the meantime, both said no, just wait for exam by onc. I have requested a second referral.

Last pap was normal, ovaries on US appeared normal as well. Recent CT scan for chest pain revealed pulmonary embolism, as well as an enlarged lymph node in lung and nodules in several organs.

I feel an MRI is justified, but I’m annoyed that nobody’s recommending one. Kind of feeling in the dark with so little info. It’s like they dropped a bomb and just walked away.

Just trying to get through each day without losing my mind. Needed to vent. Grateful for this sub

Hi everyone. I hope that I'm allowed to post here. I'm only just learning about this stuff on the fly, and figured it wouldn't hurt. I don't have any specific questions that I can't research on my own or ask AI or friends. But, I guess hearing about others' experiences have given me a broader understanding of what to expect in terms of how life is going to look like moving forward.

My mom was just diagnosed with grade 3. She just consulted with her doctor. CT scan scheduled for next week. Hysterectomy in 2 weeks.

She's 70 and was just planning to retire this year. We're rolling back a trip to Hawaii that we were planning for her birthday next month. Instead, we're going to head home to see her there. I imagine by that point she'll be starting up on chemo. She's divorced and lives alone, but thankfully she's part of a church group that can help her with logistics in the meantime.

Our small family (sister and me) all live very far from each other. I've moved to the other side of the world, and am trying to mentally prepare for what I'm going to have to do in the upcoming months. How often am I going to need to head home and for how long? Besides being in an opposite timezone and so far away, I am relatively free and flexible. Is there anything I can do in the meantime? What are the things I don't know that I don't know?

Hi everyone — we are sharing a meaningful research opportunity that may resonate with some of you.

A healthcare research team is seeking to connect with endometrial cancer patients aged 65 and above in the UK. This study is purely for research purposes . Our goal is to better understand the lived experiences of patients, so your voice can help shape future care and support.

Details:

• Online interview session (~60 minutes)
• Compensation: €75 for your time

Eligibility:

• Diagnosed with endometrial cancer
• Based in the UK

If you are open to sharing your journey, please fill out a short form. Once completed, we will contact you directly to schedule the study.

Form link:  Endometrial Cancer Patients in the UK- 75 Euros – Fill in form

Spots are limited, so participation may close quickly.