r/endometrialcancer • u/Safe_Specialist3834 • 25d ago
Endometriosis and symptoms 79 years old
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?
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u/Glittering_Hurry236 25d ago
What was the Figo score of your biopsy or D&C that gave you your diagnosis?
Does it say for example "Figo 1 endometriod carcinoma" anywhere in your biopsy report? That will tell you a lot.
After the diagnosis we start feeling everything every twinge I was convinced cancer was spreading all over in the six weeks between my DNC report of cancer and my hysterectomy, but it did not spread all over and I also lost weight because I was a nervous wreck pre-op.
Hang in there, the days leading up to true surgery are the worst days... all the uncertainty.
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u/Safe_Specialist3834 25d ago
I don't know my Figo score. I do not know what that is. I am so in the dark on all this. Sometimes I think the pain is my back or hip but then the cramps and pains start and I am thinking the worst. I am eating less becausexI am a nervous wreck about all this
Did you turn out ok?5
u/Havana-Goodtime 25d ago
I lost weight between biopsy and surgery too. Stress is a heck of a diet aid., But I had no appetite .
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u/Glittering_Hurry236 25d ago
Yes. I knew from my D&C before the surgery that I was Figo 1 and it was endometriod carcinoma because I had a thorough operative hysteroscopy with detailed uterine sampling, a polypectomy and a D&C.
We could see a shadow on the ultrasound and I'd been spotting and the endometrial biopsy was "inconclusive" so GYN and I figured I would have a benign polyp (again) as I had had benign polyps before.
Before my hysterectomy we had a lot of of information on the cancerous polyp from the D&C. So my ONC/Surgeon said he was optimistic lymph would be clear and they were.
And upon pathology after the hysterectomy I was Grade 1 Stage 1A; no myometrial invasion into the uterus and surgery ended my journey and now I go every 3 to 4 months to the oncologist for an internal check up.
I read my report on my chart before my doctor even called me so if you have access to your my chart, maybe you can check it out; and there will be more information there.
The unknown is the worst part - I was nearly catatonic and in a disassociative state for the six weeks between the cancer diagnosis and my hysterectomy, and I would burst into tears at any random time. It was hard to do anything and my little one was 11 and I had to be present to take care of my child and it was very difficult mentally...as we all here know.
But. Even if you have a more advanced cancer, you will attack it with a plan, but not knowing where you stage is terrifying.
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u/SimilarOstrich4554 25d ago
I was Grade 2 upon biopsy. Had complete abd hysterectomy 3 weeks later. Was diagnosed with Stage one, however being Grade 2 on Biopsy, but stage 1, was recommended I have Brachytherapy post op. (Internal radiation). Had 4 sessions over a 2 week period, and so far, so good. Had my surgery and radiation in 2023. Endometrial cancer, for the most part, is very curable! My Gyno Oncologist kept telling me how lucky I was! Not because it was caught early, but more because it was endometrial
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u/AngelMom1965 25d ago
It is so easy to attribute every pain and other symptom to cancer. I am 60 and starting to have back pain, etc.—because I am 60 and haven’t exercised regularly in 25 years. It’s not because of cancer (I was grade 1/stage 1A—just needed the hysterectomy). Try not to let your mind go there. It’s really hard not to anticipate the worst. Things will get better once you have your surgery and get your pathology report because you’ll know what you’re dealing with.
Do you know your grade and type of cancer? That may shed some light on your prognosis.
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u/Safe_Specialist3834 25d ago
No I don't know it. I should have paid more attention. But u r right. I attribute every pain to cancer. It is hard not to. I am afraid not to know and at the same time afraid to know. This waiting period is terrifying. Thank you so much for replying.
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u/TAB211 20d ago
It's a lot coming at you. I'm a year out from my surgery and radiation. G1s1b, 50% invasion. I'm NED and go every 4 months to an oncologist for an internal. I can't believe it's been a year, to be honest. EVERY pain, it could be a stubbed toe, I attribute to cancer. It's not logical, and I know that, I think it's how we get to live now.
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u/no-user-names- 25d ago
I chose to not ask my Grade - just to deal with it and be as healthy and as positive as possible. There’s no right or wrong. As it turned out I was told my Grade immediately before surgery, which was really annoying. (Grade 3).
However, I’ve not asked “how long have I got”, because I have a tendency to be obedient, and I don’t want to die when I’m told to! I’ve been really clear with medics that I don’t want their predictions - and one Redditors consultant refused to answer when asked, saying “you’re not a pint of milk: you don’t have an expiry date!”
OP - are you in the UK like me? If yes, we get told information in little chunks - they break it to us slowly over several appointments. If you don’t want to know something, say so to every new face you see! If you do want to know something, push for information earlier - they can give you a best guess before surgery if that’s what you want.
Best of luck with your treatment…
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u/Safe_Specialist3834 24d ago
They found a 6mm lining with cysts and an unusual edged fibroid. The tissue was scant so it was inconclusive. The dr moved straight to a hystetectomy with all the other parts going as well. I am losing weight rapidly and that is concerning me. Also have bad pelvic pain and groin back pain. The operation is this week I am terrified and all the signs are not good.
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u/Positive_Ad_3302 24d ago
Waiting is the worst! The good news is that even though your brain may be telling you it is spreading everywhere, the reality is that most endometrial cancers move very slowly.
And not that I wish my diagnosis on you, but I am 61 and went from Grade 1 pre-surgery to Stage IIIa, Grade 2 post-surgery. There were isolated tumor cells in 1 lymph node, and a lesion in my fallopian tube, along with the main tumor that accomplished 90% myometrial invasion. Not what anyone was hoping for.
Still, after chemo and radiation (which I tolerated as well as I could and worked through both), I have been NED (no evidence of disease) since finishing treatment last year. So even with an advanced diagnosis, there are plenty of treatment options.
Sending you best wishes for an easy surgery. In all likelihood, you'll end up feeling better after surgery because the source of your symptoms will be gone!
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u/Safe_Specialist3834 24d ago
Hi. Thank you so much for giving me hope. It sounds like you have had quite a time of it yourself. I wish you well and am so happy for you and the good news.
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u/ResentfulOreo 24d ago
You need a doctor for that. We cannot diagnose you.
Please do talk with your grown children about what is going on. Even if they are busy with their lives, they can be there for you in some ways, and you won't have to keep a secret. My mom tried to keep her cancer a secret while I was away at college and she failed. I knew about the cancer, but she didn't know that I knew and everyone keeping secrets and not being able to talk about it added so much stress and made it so much worse.
Just talk about it!
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u/Cultural_Room_5420 24d ago
If you want more information about endometrial cancer look at the NCCN patient brochure. The wait times for biopsy results and surgery and path results are horrible. I had about 6 weeks from pelvic ultrasound to surgery, Grade 1 endometrial cancer with micrometastasis to a lymph node (stage 3c1), finished chemo early October and brachytherapy late October 2024. All clear since.
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u/CABB2020 24d ago
Did they do a biopsy of your endometrial lining (either in-office or d&c/hysteroscopy)? You don't mention it, but if so, that pathology report should give you some important information.
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u/Antique-Anteater-988 25d ago
I’m very sorry to hear of your diagnosis. Assuming you’ve just received your biopsy results? No one here will be able to answer your questions about where the cancer is or isn’t. Endometrial cancer is staged and graded postoperatively, to determine the extent of the spread. CT and MRI are helpful but the pathology after hysterectomy will provide you and your physicians more detailed info. After my biopsy, I had a 3 week wait until my hysterectomy. My mind went places it shouldn’t have gone. I felt things physically wrong and also wondered if it was the cancer inside. I had to quit Googling otherwise I was fully convinced of the worst case scenario. Do you have friends and family that you can talk with or do things with to ease your anxiety?