r/endometrialcancer

Hi everyone! I had a radical hysterectomy and some internal biopsies on April 27th. I was diagnosed with Grade 3 Endometrial Adenocarcinoma. My daughter is turning 16 this year and before diagnosis we had this big Disney trip planned. I am still going through with our plans because I don't want cancer to disrupt anything more than it has to.

By the beginning of our trip I will be about 3 weeks post op. Recovery is going well, energy goes up and down. One of my incisions hurts still but I am able to walk about 10k steps a day without getting to exhausted. So my main question is...

Has anyone done a trip so early post op?

What rides should I avoid? Besides the "big kid rides"?

Any recommendations on supplies I can take to make the trip easier? ( I am debating buying a cheap wheelchair on Amazon, since this will be a 3 day park hopper trip).

Thank you all ahead of time :)

In February, my ob/gyn sent me to get a d&c because my endometrium was a bit too thick for his liking. (I'm 57 years old, three years post menopause.) In the ultrasound, it didn't look like it had infiltrated the wall of my uterus. Everything seemed to be pretty smooth. During the d&c in March, they discovered a 9 mm tumor, Grade 2.

I had my hysterectomy (radical, robotic, including the sentinel lymph nodes) three weeks later, on 10 April. Everything went smoothly. The surgeon told me that my abdomen had looked fine and that the pre-op CT of my torso had come out perfectly clean as well.

They were supposed to give me the final results the following week, but then called me to say that the corresponding report still wasn't typed up. So the appointment got postponed for another week. One day before that appointment, they phoned me again -- and told me that they were still waiting for some last result from their pathology department. They'd call me again once they got it.

That was on Tuesday. I still don't have a new appointment, and I'm really scared that they did some extended analysis because of some further and maybe really bad stuff they might have found. Why else would it first be a report that wasn't typed up in time, then, all of a sudden, some more pathology stuff they're waiting for? Of course they wouldn't tell me anything else over the phone. Which scares me even more.

I'm German, by the way. My surgery took place in Dortmund.

Hi everyone. So, I had a hysterectomy on April 20 pathology came back that they found a tumor. They said it’s very early. I do have to have my ovaries taken out though.

Has anyone ever had a low stage and grade tumor resurface? Should I be doing anything else?

I was invited to a wedding in July. I haven’t been scheduled for my brachytherapy yet which will be 2 sessions for 2 weeks. I had a radical hysterectomy on March 12 which was supposed to be laproscopic robotic which he started and couldn’t get everything out because the uterus was too big and stuck to the bladder. Oncologist said it was a rough surgery. He said I’d pronounce the brachytherapy 2 months after the surgery but then said nothing in the vagina for 12 weeks. So I wondered about if they could do the brachytherapy before that time frame. Anyway being I’m not sure yet when the treatments will start, will I feel well enough to go to a big wedding in July? Especially if they want to wait until the 12 weeks pass, then the brachytherapy won’t be this month, but in June. They told me at my consult it’s fine to be around people during the treatments, as in the radiation won’t be a problem but I did read you should avoid babies and pregnant women, but they said it’s safe to be around people so I’m not concerned about my being around people at the wedding as much as others being around me and the germs though I’m assuming I’ll be fine by then. My question is how will I feel? I know the side effects like pain and burning down there and loose stools and fatigue. But I’ve seen some say the fatigue after they finished with the treatment lasted a month. Would you go to a big wedding at this point? I am wearing a mask since my diagnosis so I dint catch anything and have to postpone the treatment. But done want to wear it at the wedding because of eating. I guess if I’m fine with my treatments I dint have to worry about getting sick but is it a good idea to be in a room with that many people a few months after surgery and right after brachytherapy? Would you go and chance it and after yours did you feel up to a 45 minute or longer drive and an a wedding that will last from late afternoon until late in the evening? I know I can leave early after we eat if I’m not feeling up to it. But I’m worried about being around so many people and if I’ll still be sore and whatever.

A win to report 2wpo: cancer is gone and no additional treatment is recommended! 🎉🎉

My question for folks, appreciate any insight you have: They found the tumor to be responsive to hormones, especially progesterone (etiology is chronic unopposed estrogen exposure). I'm interested in additional support to manage the hormone imbalance beyond lifestyle interventions (sleep, stress management, nutrition, exercise). Provided that I'm a good candidate for hormone therapy or other options, I'd be interested. I already do the aforementioned lifestyle interventions but need the additional support with hormone and metabolic management given life's volatility (see below). What's a strategic way to go about exploring what works (HRT in particular) with your care team (i.e., oncologist, endocrinologist, gynecologist that's a certified menopause practitioner, primary care, dietitian)?

I'm in a complicated chapter of life as a caregiver to my dad (severe traumatic brain injury), had to leave my job/career and relocate last year to support the family on site, with all of us living together as adults for the 1st time in 20 years ans having complicated family dynamics, and then navigating this diagnosis while trying to remain eligible for Medicaid.

Background: 2wpo, ovaries preserved, EC consistent w Stage 1A, grade 1, no evidence of spread outside uterus. Chemo/radiation not needed. IHC analysis showed that tumor responds to hormones, especially progesterone. Etiology is chronic unopposed estrogen exposure, largely due to having PCOS.

Thanks in advance!

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.

I feel so drained everyone. I feel so defeated. I have been battling my insurance company for over five months trying to get my infertility treatments covered, but they keep delaying me left and right. Saying things like “ohhh yeahhh we got your medical necessity appeal letter from your physician’s office, but it got rerouted to some department. So that will most likely take a few days to figured out where it went. But don’t worry we will fine it!” When they were supposed to have given me an answer about my coverage situation, two weeks ago. Now a supervisor is on the case they don’t know where my appeal letter went to and said “not to worry! I’ll get an answer back to you by Friday’s time” well Friday came and went. No answers. And she said, “well I’m a woman too so I know what kind of pain you’re going through. So not to worry I’ll let my supervisor know that you’re having period pain.” I said “no I’m having cancer pain, it’s way different than just “period pain”” smh. I guess I need representation because they have delayed my endo cancer hysterectomy and infertility now four times. Any suggestions are always welcomed. Otherwise, I feel like my deep depression (which I haven’t had since high school, now 33) is unfortunately creeping upon me and I really, really do not want to deal with that again. Oh and my doctor doesn’t seem to think anyone needs help with pain because they state this type of cancer doesn’t cause it to occur 🙄 ummm yeah. I’m so drained. And now I have to wait until Wednesday at the earliest to hear from my insurance co. They said a sup. has 72 hours to get back to me. I told them “yeah right just like they were supposed to have a determination after 72 hours after receiving my doctors appeal letter yet you all “lost” that” ugh guys I just need some encouragement and done cancer friends who get this.

Hi everyone, I was diagnosed with low-grade endometrioid endometrial cancer (G1). Overall, my case has been consistent: low grade, high ER/PR, slow progression.

What’s confusing me: my first IHC showed a normal (wild-type) p53 pattern, but after a more extensive resection, my second IHC came back similar for all markers except p53, which was reported as ~90% positive. However, the report didn’t describe staining intensity, didn’t define the pattern (wild-type vs overexpression, etc.), and p53 wasn’t even mentioned in the conclusion, while all other markers were clearly interpreted.

So basically, every marker followed a clear reporting pattern except p53. Because of this, I’m sending my slides for review at another lab.

Has anyone had a situation where a pathology/IHC result came back inconclusive or not fully interpreted, or where a pathologist didn’t make a call on a marker? Not necessarily p53, just wondering how common this is and what happened after a second opinion. I’ll be seeing my doctor in a few days, so I’m just trying to ease my anxiety in the meantime.

Thanks 🙏

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

Has anyone else experienced a rash that comes and goes after getting the Mirena IUD?

I’ve been getting a rash on my face, neck, and arms. I think it comes around the time when I’m high in progesterone, but I’m not really sure. It will also make my lymph nodes swell when it gets really bad. (The lymph nodes on my neck by my ears.

I haven’t gotten a response from my oncologist saying anything about it.

Doctor Google says that it might be a sensitivity to progesterone? But I’m not sure. I’m nervous it’s cancer related.

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.  

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?