Hysterectomy 4 months after FIGO1 Endometrial Cancer Diagnosis

Posted by fos54235 @fos54235, Apr 22 7:46pm

I am 61. Had spotting on 2/4/25. Saw GP on 2/5/25 for PAP. Transvaginal ultrasound results 1.6 CM thickness the following week. D&C on 3/4/25. Pathology report received following week Endometrial cancer FIGO 1. There is only one Gynecological Oncologist in my area & had to wait 3 was for appt. CAT scan & EKG on 4/22/25. Found out today my hysterectomy is not scheduled until 7/10/25. Waiting 4 months for surgery after the pathology report seems too long to me. I am going to try to get in another gynecological oncologists practice 1 hour from my home for 2nd opinion & hopefully get surgery sooner. What are your thoughts on a 4 month wait?

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Profile picture for fos54235 @fos54235

1st night post surgery. Managing pain with just ibuprofen & Tylenol. The oxy made be nauseous in the recovery room & delayed my release by serval hours. So far the biggest issue is the weird gait I have from my leg positioning during surgery. I relate it to have your Barbie’s legs akimbo & trying to walk straight. It’s gotten better but need assistance lifting my left leg in bed I’m using my walking poles to get around. Im sleeping in the recliner bc that is easier to get in & out off.

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Glad to hear the surgery is behind you. I’ve heard of people having weird body aches after surgery. After all they basically have us on our heads.

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Profile picture for fos54235 @fos54235

The left leg issue was better today but still needed help putting on sweatpants. The discomfort I have is on left side abdomen & that is also better today. Still only ibuprofen & Tylenol for pain. Took it very easy today & got lots of rest. It’s surprising how well I feel after just one day.

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@fos54235 Thank you for sharing this good news. I hope for you that each day your pain continues to subside and you feel better. I don't know about you but I have to tell myself that it's OK to to rest and take an easy day. It does make a huge difference when you allow yourself to do just that.

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Profile picture for inquirer @inquirer

I've been following this discussion. I was diagnosed with Serous Endometrial Intraepithelial Carcinoma via a biopsy 2 months ago. Released from hospital one week ago. Had open surgery hystorectomy with lymph nodes and omentum removed. Just got word today that I'm stage 1C, FIGO 3. With the exception of the leg issue, seems everyone here is recovering faster than me (at least from the pain). Is that because you all had robotic surgery?

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I had a total hysterectomy and one lymph node removed. And, no, I did not have robotic hysterectomy. This was over a year ago. I am still suffering the consequences -- pain in pelvis when I urinate, and urinary incontinence are the residual effects. As to the pain, this may also be due to other cancerous lymph nodes in the pelvic region, which the surgeon won't remover and/or bladder prolapse. The surgeon had checked my bladder over a year ago, after my complaining, and said that it was not prolapsed, yet pelvic physiotherapist found that it was.

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Profile picture for cookercooker @cookercooker

I had a total hysterectomy and one lymph node removed. And, no, I did not have robotic hysterectomy. This was over a year ago. I am still suffering the consequences -- pain in pelvis when I urinate, and urinary incontinence are the residual effects. As to the pain, this may also be due to other cancerous lymph nodes in the pelvic region, which the surgeon won't remover and/or bladder prolapse. The surgeon had checked my bladder over a year ago, after my complaining, and said that it was not prolapsed, yet pelvic physiotherapist found that it was.

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Thanks, for the info. I'm 3 weeks out, with pain when I urinate or have bowel movements. I hope it resolves in time but am a bit concerned hearing your story. In your case, I don't understand why the doctor wouldn't remove cancerous lymph nodes. Do you think you should seek a second opinion?

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Are you getting chemo before your surgery? Not sure of stage but I was diagnosed with stage 3C endometrial cancer in Feb and immediately began on chemo and immunotherapy. My CA125 numbers have gone from 1641 to 81 now. I have my 6th chemo treatment on Monday June 30th and a PET scan after that to see how things look so I can get my hysterectomy.

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Profile picture for inquirer @inquirer

Thanks, for the info. I'm 3 weeks out, with pain when I urinate or have bowel movements. I hope it resolves in time but am a bit concerned hearing your story. In your case, I don't understand why the doctor wouldn't remove cancerous lymph nodes. Do you think you should seek a second opinion?

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I asked another oncologist about this and she said 1) it wouldn't stop the spread of the disease, since it's in the bloodstream and 2) it would be dangerous to do so.
I also read that removing lymph nodes can lead to lymphedema, and worse, morbidity.

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@cookercooker My oncology surgeon told me that removing lymph nodes can cause lymphedema. This is something we discussed prior to my hysterectomy as she told me that two lymph nodes on either side of my pelvic would be removed for sampling to see if the adenocarcinoma was present in those two nodes. If the cancer was present then she would remove more lymph nodes. Fortunately my lymph nodes showed no evidence of disease.

You've already had a hysterectomy so what I discussed above in my experience doesn't directly pertain to you. I am wonder, though, if indeed there is cancer in your lymph nodes that is causing the pelvic pain. I'm a little confused by what you've written.

When do you see your oncologist again?

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Yeah. Well I'm confused too. But if two oncologists said "No", then I'll take their word for it. I see the oncologist that's heading up the clinical study I'm on in a couple of days and I'll ask for clarification.

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Profile picture for NikkiWW @nikkiww7

They said they'd call me by 8:15 tomorrow (Wednesday) night for when to report on Thursday. I'm ready (more or less). I have a durable POA for medical (as well as financial) set up, but was looking at their advanced directive, which has more detail, so I will complete that as well. I've finished all the tasks and education materials (and even read the key parts aloud to my SIL, who will be my driver/caretaker).

I did have a hard time healing from the adduction of my hip when they pinned the ball at the top of my femur (broke 2 years ago), and that overall injury left me with a small limp when I'm stiff. So a bit of concern about the positioning, but got out my simple stretching exercises for the hip rehab and will check in on those (before doing them).

And yes, still trying to distract myself with the paint choices. the ones I bought the samples of and tried did not look at all like the chips when they got outside in the real world, so back to the drawing board - I picked up 6 more sample qts in Austin and will try to get those tested tomorrow if it doesn't rain here.

Again, I appreciate all the help and encouragement. It's made a world of difference to have everyone on this list who has gone before me, posting and talking about their experience. I do not feel as alone as I did!

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How are you feeling one day post surgery?

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Profile picture for sbryant @sbryant

Glad to hear the surgery is behind you. I’ve heard of people having weird body aches after surgery. After all they basically have us on our heads.

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Issue with left leg groin pain is vastly improved. Increased mobility & able to put pants on myself. This being an issue was not on my radar or in anything that I read online. Other than this recovery is going very well.

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