Hi everyone. I am 54 years old. Was diagnosed with colon cancer and during the scans. They found something on my uterus that they were concerned about so they recommended that I had a complete hysterectomy at the same time that I had the colon resection for the colon cancer. Had the surgery July 16th. Ended up that what they were originally concerned with was nothing however they did find a stage one endometrial cancer. Both the colon cancer and endometrial cancer came back as very early stage one cancer, which I am so thankful for. I do not need any chemotherapy and I was referred to see a radiation doctor to get his thoughts on radiation for the endometrial cancer. Based on my staging, I do not need it however, here’s where my question really comes in.. The doctor said that there is some controversy and doing the robotic hysterectomy. Back in the day before robotics, they would cut you open and take everything out in one piece. But robotically they have to cut it up and then remove it to your vagina. He says that some believe that there is a chance of microscopic cancer cells getting out when they do that. But he says others believe that’s just a bunch of bull. Now I am in the back of my head worried wondering if that could’ve happened. He’s not necessarily recommending. I do radiation treatments. He is kind of leaving that up to me, but he says I’m probably good if I just continue to go for frequent checkups with my gynecologist every six months. Which I am fine with I really didn’t wanna have to do radiation unless I absolutely needed to. Does anyone have any information on this or suggestions??? I was not having any kind of symptoms of having endometrial cancer before the surgery.

Hi friends,

Im 3 weeks post op of a full lapro hysterectomy and just got a call from my doctor with my pathology results. They found stage 1 cancer in my uterus. She said it was such a tiny amount it was almost undetectable and was just starting to grow into the wall. She’s confident they got it all with my hysterectomy, but is referring me to an oncologist. They’ll likely do a CT scan to make sure it hasn’t spread.

She also mentioned the oncologist might recommend removing my ovaries, but I really, really don’t want to do that unless it’s absolutely necessary.

Has anyone here had a similar experience, where cancer was only discovered after a hysterectomy? If so, what was your journey like? I can’t imagine having another surgery after this recovery. It’s it common they want to remove ovaries?

Thanks in advance for sharing 💜

Hi - I have an 79 year old family member with high grade serous carcinoma. She had a full hysterectomy including appendix a few weeks ago, has been told she will need chemo and is seeing the oncologist this week. We'll be asking about stage and grade, proposed treatment and side effects but wondered whether any advice here on other questions to ask at this stage?

I am now waiting for scan results to check spread. The stats on this cancer are terrible. I am 56 years old.

My symptom journey started with mild but persistent pelvic pain. Also started having changes in BMs. More D. Also, worsening insomnia. After a few weeks, I went to doctor and ultrasound showed 6mm lining but otherwise normal. Spotted blood with a BM then GP ordered a CT scan. Normal. Did a Pap smear also normal. A few weeks later a big bleed and went to ED. Then I was referred for a biopsy. I opted to go D&C/Hysteroscopy which happened last Wednesday. Gyno told me it looked like cancer after I woke up. Pathology confirmed the cancer.

Now a lot of crying and anxiety that is uncontrollable. Facing mortality with chronic insomnia is just bad. I share my home with my wonderful brother and one of my adult children still lives with me. I was widowed at 35 so my little family is everything. I am so upset that my children face losing their remaining parent. my adult child who lives at home is my best buddy.

I am being referred to the Gynaecology oncology team at my local hospital next week. Any tips for coping? Does anyone know why the cancer causes insomnia? medication?

I had a radical hysterectomy five weeks ago due to recently diagnosed endometrial cancer. Results were Stage 1a without any permeation of the uterus or cancer in the cervix area. Although research is limited, my doctor offered low dose estrogen HRT as an option for the onset menopause symptoms. I am 59 years old and went through menopause at 57. Anyone have experience with low-dose estrogen after uterine cancer diagnosis? I saw a small international study that suggested even including progesterone for added benefits, although the uterus is gone. My medical care is at a major research hospital, but I imagine this is an area where I may receive different advice from different physicians. Curious on others experiences. Thank you!

It's been just over a year since my diagnosis. I had my surgery in August of last year. I'm finished with radiation and chemo. I'm just doing 3 month check-ups from this point forward.

It's weird. My medical journey with cancer is over (unless I have a recurrence, and then it isn't).

Here are two things I learned about port installation and removal (fairly trivial):

1. when you are having the port installed or removed, use Lidocaine cream on the chest area about an hour before the procedure to numb your skin. I did this by accident before the port installation, and we all laughed. But it made it *that* much easier to tolerate the injections of numbing agent. On the removal I did not do this, and I *deeply* regret it.
   
2. Don't get your port removed at the end of summer. Wait for fall. I can't be submerged for three weeks, which means I'm going to miss out on swimming before Labor Day (which is when all the outdoor pools close). This is extremely trivial, of course, but I'm really disappointed.

Hi everybody, I've just got my mri scan results for edometrial adenocarcinoma grade 1. As I'm having communication problems with my current gyn (Im trying to find a new one) and Im not going to see him anyway until the end of Agust (the first meeting of the oncoteam), I thought I might ask you about the stuff I cant make out. So, the results are mixed. It says I dont have abdominal fluid built up, my bowel, bladder and cervix seem intact, also my right ovary and the outer lining of the uterus seems intact. but there is a 3,2 cm long "atypical ingrown cyst like " something (Im trying to translate from my native language) on my left ovary which the radiologist found suspicious for being cancerous. two gyns examined me before with transvaginal ultrasound, one was very precise and took a long time to look well at everything. they both said my ovaries are normal. but how could the ultrasound not see sg that is literally bigger than my ovary? It didnt come as a surprise though. Around the time my ec got worse (I didnt know it was cancer then), about 2-3 month ago I began to feel pain when I pressed my tummy around the left ovary, I even asked myself what could this be? I know no one can answer this question until the hysterectomy and the pathological report, but honestly, it made me totally depressed. Is it a metastasis? Or do I have ovarian cancer too? Also, after injenting the contrast matetial, the radiologist indicated that quite a lot of small sized lymph nodes were seen around my uterus. So, has it spread to lymph nodes already? The initial biopsy said there is no sign for such invasion. It probably spread to the myometrium (as Im trying to interpret the results), but it was no surprise, the precise doctor saw it on the ultrasound and told me. It took me so much time and effort to be in ok mood again after recieving my diagnosis 2 weeks ago, I've done so many meditations, visualisations, mindfullness practices, journaling, being grateful and now it all collapses again. I feel like I either have two cancers, or the one I have has spread which puts me in stage 3 or 4, or maybe the two have spead. I just feel like hiding and crying. Thank you for letting me write this and reach out to you! 💜

What could this be? Is this because suddenly my body is not getting or producing much estrogen? I was on HRT for 4 years before I was diagnosed. Or could this be lymphedema? I am at least 50 lbs overweight, and do have some varicose veins. But this seems a bit sudden. Should I tell my oncologist about it?

Anyone on a GLP-1 after chemo?
Or even during radiation?
I have like 40 pounds to lose, 15 of those from my chemo!

Hey everyone! So I’m 8 weeks post op now! 💕 Went back to work two weeks ago without any restrictions from my doctor (my body is so sore but honestly the hot flashes get me more 😭). But I’ve been doing pretty well otherwise! It still feels kinda weird to lay on my side, and laying on my stomach still feels sore too. I think what I hate more is like this weird feeling when i rollover to my side too fast I just feel like my insides go flying 😅 But anyways, I do have a question for those of you who underwent robotic hysterectomy

I still have my incision scars, they are much much smaller but definitely still there. I’ve noticed that my jeans’ waistbands if they hit right at my navel it irritates my scars, or if the jeans are an exact fit it just feels like my abdomen is being squeezed by the end of the day and even I unbutton its like relief at last ✨

I wear jeans for my bottoms at work, we are not allowed to wear leggings (though sometimes the leggings fabrics also sorta irritate/catch on the scar sites)

I was wondering what you wear to feel comfortable if you work? I’m a banker but again we are allowed to be semi professional and jeans are allowed. Would maternity pants work? I think those are the jeans that have a soft elastic band? I just don’t know what to do and part of me is thinking the reason my abdomen and belly are so sore and achy lately is because of the jeans I wear :/

My mom’s pathology results were posted to her portal at the end of last week but no one on her oncology team has called to discuss them. I read over them and based off of my not so extensive medical knowledge it basically is just a big question mark. Does anyone else have experience with this or can interpret them a little better than I can?

Hey everyone, I was diagnosed with endometrial cancer recently and wanted to share my experience to see if this is just how things go or if it’s worth finding a new oncologist/second opinion.

Before my diagnosis was confirmed, I went through several tests: LEEP, colposcopy, MRI, PET scan. My oncologist ordered the PET scan over telehealth to check the stage and see if it had spread. She told me to come in person after the scan so she could go over the results, explain the stage, and walk me through the treatment plan.

Well… appointment day came, and instead of seeing her, I was seen by her nurse practitioner. While the NP did mention hormone therapy and agreed when I brought up the IUD option, I left with a lot of unanswered questions — no clear explanation of my stage, no detailed breakdown of my scan, and no big-picture treatment plan from the oncologist herself. As obviously because she didn’t see me at all.

Is this normal in cancer care? Or is it a sign I should switch to another doctor / get a second opinion?

Backstory: I got a hysteroscopy with endometrial biopsy done in February because the RE noticed I had thick lining. The endometrial biopsy came back normal/benign. He did tell me I had polyp(s) at that time but only mentioned they needed to be removed before a transfer. Okay cool Did my IVF retrieval in May and did my polypectomy to remove the polyp in July and I was going to start prepping for an FET this month until he told me that the pathology report from my polyp came back abnormal with complex atypical hyperplasia and we had to cancel my FET. I was so upset. He talked to me on the phone and said it’s not cancer yet but can lead to it if untreated. However, he did say, that since my first biopsy in February was normal, he wants me to do a follow up hysteroscopy/endometrial biopsy with my GYN. He said it definitely could be that the abnormal tissue was only in the polyp (which is now removed) and not my actual lining so he wants to double check that it didn’t spread or anything. And if its all clear, then i can proceed with my FET. Im just super anxious and worried about the what if on this situation. If anyone has any similar experiences please share what ended up happening! Thank you for listening to my rant 🫶🏼

I have been diagnosed with endometrial cancer but don't know how many other things it has affected. i am 70 years old and have terrible back, pelvic and leg pain that has gotten worse over the past 2 weeks. I have pelvic pressure and am very tired. I am losing weight quickly when it is usually hard for me to lose weight. I had one episode of lite bleeding and a clot I had CT ultrasound of abdomen and pelvis and it only showed endo thickness of 6mm. Has anyone else had these symptoms and does this mean the cancer has spread all over?

Anyone here with dedifferentiated Endometrial carcinoma ? (Plus dMMR for bonus points). I haven’t started treatments yet. Meet chemo/immunotherapy specialist tomorrow. Hoping for hope. 🙏

Hi, I’m currently having a health scare and was wondering if anyone else around the age of 22 or close enough in age has been diagnosed with any cancer of the cervix, ovaries, uterus, vagina and vulva etc in the uk. I’m currently under the urgent suspected cancer gynae assessment service. I suppose in a long winded way I’m wondering how common it actually is for people in their early 20s.

who had endometrial cancer here and have lynch syndrome? how did you take the result? how are you dealing with lynch syndrome? i am really scared, because my test results showed high probability of lynch syndrome. i feel so devastated. although i have yet to confirm through genetic testing, i am petrified with lynch syndrome itself and the many cancers that you are high risk of if you have it. feeling crazy and devastated, never been so scared like this. my whole world feels like it's falling apart. i need advice to get through this, anxiety and depression is kicking in..

My mom [58F] was recently diagnosed with endometrial cancer after going in for a hysterectomy. The hysterectomy was aborted due to her OBGYN finding cancer. She was referred to an oncologist and samples were sent to a lab for testing. That was July 22. Since then, we have:

• met with the oncologist, who was the one to first call it endometrial cancer

• done a CT scan, which showed an enlarged uterus and other signs of endometrial cancer along with 3 nodes on her lungs and one lesion on her pelvic bone (not 100% sure they are cancerous but going to be treated as such)

• met with her chemo team, who said they do not recommend radiation or a PET scan at this point (she will still be meeting with the radiation team on Tuesday per her oncologist)

We still have not gotten the pathology results back, and have not been told type or staging of her cancer. Our current timeline is one week for insurance to approve chemo and then we will schedule her first round.

Has anyone else started treatment without being told type and stage? How common is this? Is there anything else we should be doing before she starts chemo?

Hello. I am 24 stage three endo. Scheduled for a hysterectomy in less than a week. My doctor told me I would need chemo. I am currently a usps mail carrier. I’m taking time off to have surgery. But I’m thinking about not going back after I heal. It’s a very active job and I just don’t think I’ll be up for it especially if I have to do chemo. Do you have any job recommendations that are easier on the body and wouldn’t mind hiring cancer patients

for endometrial cancer stage 1A/Figo 1 Well Differentiated Cells. Negative Lymph nodes. Confined tumor in the uterus. Aside from hesterectomy salpingo oophorectomy procedure, have any of you undergone chemo or radiation or the surgery itself is the only treatment you've done?

i am 41 years old, i had hesterectomy salpingo-oophorectomy last june 28. i am almost 6wpo. but before my hesterectomy, my ob did some biopsy on my thickened uterus during my insertion of mirena. my symptoms were prolonged mens since january, then on may 12 and up until my surgery i had mens. there are days when it's heavy and days that are not. but my mens never stopped until i had hesterectomy. biopsy came out after 2 weeks, the result was adenocarcinoma. and right there my ob asked me to immediately have surgery. 5 days after i had that result i went right away to the operating room and had my hesterectomy. after 2 weeks of waiting for the biopsy again, my result was stage 1A Figo 1 well-differentiated cells. tumor confined in the uterus. lymph nodes were negative. my ob said they successfully removed the tumor. but my onco asked me to do another test from the tumor they had removed. that is the P53 and MMR test. the results will come out after 5 or 10 days from the date the specimen had been submitted. i am really scared as per writing this. because tomorrow the results are coming out and i don't know what to expect. i had not done any treatments yet, but i am hoping the surgery itself is the treatment. what if the results of P53 and MMR are poor? what does it means? has anyone of you got additional testing like this? eversince i had been diagnosed with endometrial cancer i feel scared and worried everyday. i sometimes isolate myself and disassociate with other people. it changed me a lot. i only enjoy my husband and kids company. is that even normal? i don't want others to know about my diagnosis other than my family. right after my surgery, i do walking at least 30 mins a day, because i also had ileus right after my surgery. i was required to do walking right after. i do threadmill brisk walking 30 minutes everyday. but sometimes my legs feels sore and my left groin is aching when i pinch it. is that normal? also i tried to wear off my binder and switched to girdle after 2wpo. because i am an active person even before, i have contact dermatitis because of my daily walking exercise now. i do sweat a lot. what are you using and how long you've been using them since your po? i also experience hot flashes when i'm having anxiety or when i feel irate. but most days i don't. anyone of you experiencing that? i am a pescatarian, i removed all my unhealthy lifestyle like eating from fastfoods, junkfoods and sugary foods. i am focus on eating fruits, veggies, whole wheat foods and fish. plus lots of water. i'm trying to be optimistic at times, but there are days when my anxiety kicks in. i do have a good appetite despite my diagnosis. what is that 5 years rate of survival which i keep seeing in the internet? can someone explain that to me? any advice from you guys who are going through this experience? i just need someone to tell me that everything's gonna be okay and that we'll live a normal long life like the others who don't and never had cancer. btw i have a family history of cancer. my aunt and dad had it. but my aunt is very much alive until today. its been like more than 20 years when she had cancer. does endometrial cancer have a high chance of recurrence? praying for everyone's complete healing. i hope i get clear answers

I’ve posted here a few times now but my mom was diagnosed with stage 1b endometrial cancer. She had a full hysterectomy a month ago. Her lymph nodes were not tested, she also didn’t get any ct scans or mris.

Recently her stitches on one side got really infected so we went to the hospital. The nurse decided to do a ct scan on her pelvis and abdomen to see if there was any abscess. The results came back clear and it didn’t show any infection or cancer. Does this mean she’s cancer free?

We’ve been waiting on her ct scan for months and it’s finally done but I’m still unsure. I asked if they see anything on her lymph nodes and the doctor stated that everything looks clear but since she didn’t have a chest scan he said he’s not 100% sure. All I wanna know is that she’s cancer free. This has been going on for months I’m honestly so mentally exhausted

Is this common when getting a hysterectomy? My cancer wasn't so terrible, as cancers go, but I had/ve endometriosis, saplingiosis, adenomyosis, a bunch of cysts, fallopian tubes not working...not to mention the 3 (minor) hernias found on the CT. Did this happen to anyone else?

Curious about the typical follow up frequency post surgery and adjuvant EBRT. I(80f) diagnosed with Stage 1a Grade 3 endometrioid adenocarcinoma dMMR. Had complete hysterectomy, ovaries, cervix etc. negative lymph nodes and just completed 23 days EBRT. After my upcoming CT for new baseline, GynOnc who was my surgeon says to have checkups just every 6 months with my regular OBGyn. He also said no blood tests, just the normal vaginal exam during checkups. Does that seem in line with others experience? Just want to make sure nothings going to be missed. (And OK I am a bit of a worry wart!) Thanks!