I'm basically a few hours away from a meltdown. Im 8 months PO full hysterectomy pevic lymph nodes cervix omentum removed. I was diagnosed with a low grade endometrial stromal sarcoma FIGO 1B.

My post surgical treatment has been 160mg of Megace split 2x daily. Ive tried to manage the side effects but combined with surgical menopause are destroying my body. Ive gained 80+ pounds since starting megace, I have joint inflammation, frozen shoulder, high blood pressure, insomnia, moderate to severe gastrointestinal distress and blood work just came back today saying there is a high likelihood that I have a blood clot(s) somewhere in my body.

I have an appointment this week with my oncologist to discuss getting off megace but I dont know any alternatives. My cancer has a 50% chance of recurring so im definitely worried about that if I stop the megace. I also have an appointment this week with a cardiologist and with ortho next week about my shoulder.

I just feel so isolated and alone in this. I moved to a new state 3 months after my surgery/ diagnosis. My PCP is wonderful, my psychiatrist is supporting me through managing the depression and anxiety. My oncologist is a part of one of the best cancer centers in the US so I trust her. But I feel so out of control and I'm despairing as my body gets weaker and weaker.

Tldr: I'm suffering major side effects from taking megace. Anyone experienced the same and what was your next course of action?

To give you an idea how bad my dr is...ive seen her 1 time since the 1st visit in june After surgery i had to make someone get her on the phone to tell me what happened because she closed me up and didnt do the hysterectomy. I said so its stage 4 and she said im afraid thats what we are looking at dear. I hate lwhen she calls me dear. I go to mychart ....I have done all my scans figured out on my own all my diagnosis with chatgpt she never goes over results and started chemo and I got a port she is nowhere you talk to the nurse. I just go where my chart says i have an appointment. It is Unreal!!!

I have an appointment wit a dr from md anderson in a little over a week.Thats great but also tells me no time to waste (clear cell carcinoma) I am so glad i need the clinical trials they have available

Hi ladies! I’m trying not to absolutely panic and lose my mind but it’s not quite working. My mom went in for a hysterectomy last week and they immediately stopped because they found cancer. It had spread out of the uterus to the endometrium and that’s what they saw initially. A few days later the pathology confirmed cancer but results were inconclusive so it was sent to another lab (seems like a bad sign). She was immediately sent to gynecology/oncology where they did a CT scan. It seems she has Mets on her lungs, a lesion on her pelvic bone, and has lymphadenopathy noted in various places. The oncologist says it “very treatable” and they will start radiation to shrink the pelvic lesion (she’s in horrible pain and they think that’s why) and do chemo to shrink the Mets and then do a hysterectomy hopefully. We haven’t gotten a full staging and diagnosis but I’m assuming that since it’s spread to the lungs it’s at least stage 4. I’m beyond devastated at this thought because of the life expectancy. Can someone please tell me their thoughts on the situation and maybe share some positive chemo/radiation/success stories. I’d be so very grateful for any insight!!! I also live 1300 miles from my mom and am seriously considering moving home. Do you all think I should?

I’ve been thinking, well here I am, I have made it through this stage 1 serous cancer journey - biopsy and diagnosis then, hysterectomy, chemo and brachytherapy. I can’t say it was easy but I am grateful that all of my medical teams were led by women, every Dr., nurse and nurse navigator and I feel like they kept me informed of what was ahead every step of the way.  But one thing I was not prepared for at this point is why I cry when someone asks me about my chemo experience, and I try to explain how my entire body was on fire from Taxol. Or crying while I am explaining that radiation was not that hard nor was it painful but I am thinking about how embarrassing and humiliating brachytherapy was, and how I was sent home because I could not fart on command for the CT scan one session. Oh brother!

I finished radiation in May, no sign of cancer so far, my family and friends are relieved and happy that I am “all done and well” now after it all.  I don’t feel that way yet…but I guess I’ll get there in time and the posts in this room have been very encouraging. Thanks all.

Hi everyone, Im in my late-forties from Central Europe and was diagnosed with endometrial adenocarcioma grade 1 on Tuesday. I've been having symptoms for years, but they were dismissed with the hormonal madness of perimenopause, plus Ive always had somewhat irregular periods, so the cancer was only discovered recently as my symptoms got worse, like constant bleeding, pelvic pain and discomfort, etc. An obgyn ordered a D&C with biopsy, but even he told me that it's just a routine procedure for abnormal vaginal bleeding, but usually they dont find anything wrong. The results of the biopsy arrived on Tuesday in my medical cloud, that's how I discovered what is going on. I could only talk with my family doctor, the obgyn is on holiday. She said the cancer cells reached the ends of the sample which means they reach further away. Im scheduled for an MRI scan within 2 weeks, but till then I have to wait. And it is killing me. I read a lot about this type of cancer and it's so hard not to know which stage I am and what the treatment will be. Im scared that I have an advanced cancer, maybe even grade 4. It must have been there for years and years but everyone thought it was just perimenopause. I discovered that I have all the symptoms of advanced stages, for all types of metastases, even lung cancer (after d&c the anesthesiologist said that he thinks Im sligjtly asthmatic because of the way I was breathing during anesthesia, but at that time nobody knew I had cancer, so it might be that?) I found it difficult to breath after anesthesia, got a bit of oxygen, but doctors said it's ok and common. The obgyn said it's because Im overweight I just cant stop my mind now and Im scared that it's too late and Im going to die soon. Im trying to do meditations but I just cant stop. Can you give me some advice, ladies?

I was diagnosed in May grade 1. I’m having surgery next month, everything but ovaries. My oncologist explained there is certain criteria they look at during pathology and if that criteria is met, I will have to have a second surgery to remove ovaries. I just turned 40 and he doesn’t want me to go into surgical menopause if not necessary due to my age. Has anyone else had this recommended. I recently moved out of state so he’s the second oncologist I met with and the first was insistent ovaries have to come out. I’m glad to keep them, but the different opinions have my mind spinning.

Also, is there anything you are truly glad you had to help with recovery. I keep reading “buy this don’t buy that” and would love to hear what helped people recover. Thank you in advance!

hi 👋🏼 my 56 year old mom has stage 3a, grade 1, endometrioid type. it only invaded 1mm into her uterine lining, but cells floated through her fallopian tube and grew an 11cm adnexal mass inside one of her ovaries. all came out with surgery and clear margins. negative sentinel lymph nodes, omentum, peritoneal washings, cervix, fallopian tubes, and other ovary. so no cancer cells outside the uterus and ovary at all. she just started round 1 of 6 carbo/taxol. just curious if anyone was able to do chemo only and no radiation? her gyn oncologist didn’t give us a definitive answer if she will need a rad onc consult after chemo or not.

How much did your CA125 fluctuate when tracking during chemo? Is it normal for it to fluctuate a bit?

Hi, new here.

I was diagnosed back in January and prior to surgery I was given a vaginal exam. Then, four months later, I was given another one to check that things had healed post surgery.

I get why these were necessary.

However, I have a follow up scheduled for next month, which I've been led to believe will include another vaginal exam and I can't figure out why.

What are they expecting to find, given everything cancerous was internal?

Hi everyone!

I had another question for you all. So as previously mentioned I’m now at 6 weeks post op, started work back up Monday

I’ve kept my ovaries, had my uterus/tubes removed

But now it feels like I get hot flashes at least once every morning (anywhere before noon) and it lasts maybe 30 minutes to an hour where I’m just really hot and sweating as if I’m out in the sun even when I have an indoor job (banker).

Its so bad I had to buy myself a portable fan to have on hand to cool off with when it happens. Has anyone else experienced this?

I’m only 30 and was not menopausal or anything prior to surgery. No chemo done either.

Thank you guys 🤍

I'm in my 30s, my mom is mid-60s. She had some intermittent pelvic pain about a month ago, and then some light post menopausal spotting for a few days, 2 weeks ago. Got into her gyno right away for an exam and ultrasound early last week. Nothing visible on the ultrasound except fibroids (which she's had all her life) and a 5mm lining, so they did a biopsy. Got the pathology and diagnosis yesterday that it's high-grade serous endometrial cancer, and her gyno recommended a hysterectomy ASAP to start with.

She's been referred to a gyno oncologist (with City of Hope, if anyone knows anything about them?) who seems to have good reviews and who her regular gyno says he would trust. Unfortunately, there's a two-week wait time before she can get in. Is that normal? Or is that too long for a cancer like this?

Everything I'm reading online is pretty much telling me we drew the short straw, that this type is "rare" and "aggressive," that it's usually caught late in the game, and basically that I can expect to lose my mom within a few years, barring a miracle. I don't think I've stopped crying for more than an hour or so in the last 24 hours. Is that pretty much the cold hard reality I'm facing? Or are there more "success" stories out there with this kind of cancer? I've never been so scared in my life. What do I need to know? Thanks for any advice you can give.

I went to a new doctor today. I gave them my medical history online, in advance, and they have full access to it in their computer, and I refresh them verbally in the office, but they still ask silly questions.

I've had a complete hysterectomy, but they will still ask if I might be pregnant.

I lost 40 pounds since my diagnosis. They ask me how I lost that weight. "I got cancer, did radiation, and chemo."

A year ago I was diagnosed with endometrial hyperplasia without atypia (NHS) and was on hormonal treatment for it and having regular hysteroscopies to keep an eye.

My most recent was earlier this month and the biopsy found endometrial cancer which was and still is a total shock to the system as wasn't expecting it due to the hyperplasia being without atypia.

I was alone when I received the news and was also told that they wish to do a total hysterectomy and BSO which is another shock to the system as don't have children yet.

I feel really guilty for struggling as I know that it could be worse but I can't help feeling grief at the loss.

How did people in similar situations cope and did you have other treatment instead? TIA

TLDR: mom has advanced uterine carcinosarcoma, looking for recommendations of specialist doctors for 2nd opinion.

Mom was diagnosed with uterine carcinosarcoma stage IV at the end of April, she had a full hysterectomy shortly thereafter, surgery was successful but shows metastasis in the pelvis area. She started her chemo with carbo/taxol + immunotherapy Pembra. Unfortunately, after two sessions of chemo, new tumors were found in the same area at 9 and 4cm. Wtf, how do they grow so fast in just two months.

We like to seek 2nd opinion with a doctor specializes in this type of cancer, do you have recommendations for specific doctor? Our current doctor is compassionate, but is a general oncologist and doesn’t have enough expertise in this type of cancer. I have started the process with sibley, Dana faber and Sloan Kettering.

Thanks in advance!

Hi anyone here that is pMMR with FIGO 3 stage 4 that had any luck with immunotherapy with Lenvima?

Hello, anyone here familiar with PiMHEC? I was dx Dec 2024 Stage 4 . It spread really fast, I am pMMR, so chemo and keytruda worked at first and went into remission April 2025, got ct last week and it came back on my lymph nodes. And also 8mm nodule on my lung. I will start chemo again. There is really no info regarding this.

I was diagnosed with clear cell carcinoma stage IV endometrial cancer. At surgery it spread to my peritineum bladder omentum lymph nodes she took biopsies and it said it was something calles gastric cervical adenocarcinoma. Closed me up no hysterectomy. It apparently comes from the cervix, but they said that there's markers that are saying that it could be grom my stomach pancreas or bile duct. WtfSo I can't even look at it anymore, it's all spread everywhere, and i'm just so upset sitting here writing birthday cards for my grown sons. Making them memory folders. Im weird like that

Good afternoon all, I am one week post-op from a total hysterectomy. Endo cancer grade and stage 1. Feeling very grateful but also struggling with some feelings of deep loss, anger, disappointment, and mourning me.

A little backstory as I broke my foot 6-2 same day I found out I had cancer. Struggled through the pain of my foot and loss of mobility for 6 weeks and then, my surgery right as I was recovering from my injured foot.

I started HRT low dose estradel patch last Sunday with progesterone. I spoke with my therapist yesterday just to try to process everything that has happened, the loss, the anger, the loss of my body and mobility, and a general sense of being so angry but trapped.

Don't get me wrong, I know I'm strong, I know this is just the worst of the worst and it will be better everyday, I know I'm going to live and survive and for that I am grateful.

However, since processing with my therapist, I've just been an emotional train wreck. It's like a Cascade of emotions that I cannot turn off. Has anyone else had similar experiences? For reference, I am 46 years old and had not gone through menopause so I am certain of a lot of these big feelings I am having is related and my body saying WTF has happened to me!

Thanks for the love and support in advance. This s*** is hard.

My mom has stage 1b endometrial cancer. Her lymph nodes weren’t removed during the surgery so that concerns me a bit. Did anyone get any type of tests like ct scans, pet scans or blood tests before radiation or chemo? My mom had literally 0 tests done and they’re gonna be starting radiation soon. I’ve asked so many times that they do a ct scan but no one listens. It’s so frustrating I’m so worried. Is this normal? Also what treatments did anyone with stage 1b do?

Context, my mom, 66 years old, was just diagnosed. Can anyone interpret these findings for me? Of course it’s the weekend and everyone’s home from her clinic. Any bit helps, thank you so much.

Hi all, So I previous posted about my carcinoma diagnosis and we all know this is an estrogen, dependent disease. It’s usually caused by high estrogen with unopposed progesterone. Is there a way to balance hormones in the body naturally? I have had high estrogen my whole life which leads to a whole bunch of other issues like polyps, fibroadenomas of the breast, which I had to have removed surgically and a bunch of other symptoms that could also cause different types of cancer in the future , along with other diseases…there has to be a better way than just waiting to get the disease and treating it when it comes through removal of an organ. Finding the root cause of the estrogen raging in the body should be important! High estrogen leads to breast cancer, cervical cancer, diabetes and so many other scary things!

Hello, I 36f was diagnosed with complex atypical hyperplasia through a biopsy in May after an ultrasound found my lining was 33mm on cycle day 10. I was referred to an OBGYN-oncologist and last week had a hysteroscopic resection, D&C and IUD placement. The doctor stated that my uterus was “completely filled with polypoid tissue”. She called me today to let me know that the pathology shows adenocarcinoma, grade or stage (I can’t remember which word she used) 1. My fiancé and I wanted fertility sparing treatment so I have my first biopsy in October to see if the IUD working, if not, I will have the choice of total hysterectomy or to try adding megace for another 3 months but she isn’t a huge fan of that medication. The entire pathology report is really long and complicated but the final diagnosis states “Endometrioid adenocarcinoma arising in a background of complex atypical hyperplasia. Areas of squamous differentiation present.” She released the report to me after we got off the phone so I didn’t get to review it and ask in detail what that meant.

I feel a bit in shock. I have my post op appointment next week and she said we can go over all my questions then. If anyone can give me ideas of important questions that would be great. One thing I’m wondering is I have seen people list grade and stage and FIGO and she didn’t mention anything about that. Do I need to ask that? Thank you. Any input is greatly appreciated.

Hi all, I would be interested in hearing experiences (especially positive) regarding serous uterine cancer being treated with Herceptin.