Hysterectomy Cancelled

Thank you for your comprehensive response Nightingale19.  We do seem to have followed a similar path.  My first histology results showed atypical hyperplasia with one large polyp.  During a myosure procedure the gynaecologist removed 80% of the polyp and took a biopsy of the womb.  I too was bleeding very heavily during this procedure.  I did not have a GA. Was informed over the phone that the womb was stll precancerous but the polyp was cancerous. A mirena coil was fitted at the same time.  Told by my CNS it was stage 1a, grade 1.  I have never met a surgeon or oncologist was just booked in for a total hysterectomy.  MRI showed no spread but I have not had a CT scan.

I dont know whether it is because of my frame of mind or whether it was because I was very upset when I met the CNS for the one and only time, but I get the impression she is telling me what she thinks I want to hear - or is this completely irrational?  My husband says ethically they cannot do that, but I have read of so many cases where it was predicted early stage which changed after the hysterectomy.

I realise that fear is getting the better of me and am trying to get a hold of things   I really appreciate you sharing your experience.  Thank you.  How long ago was your hysterectomy?  I hope you have/are recovering well?  It is a scary time isn't it?

I had my hysterectomy in November 2019 and radiotherapy in January 2020. If your final result is stage 1a grade 1, you should not require any further treatment. I made an excellent recovery from my hysterectomy etc and was a bit dubious about radiotherapy as a result, given the  possible longer term after effects. But Grade 3 cancer is more likely to recur without it. If you just need the hysterectomy and are now in good health you should be fine. 

Just to add my staging and grade of cancer was the same pre and post  op. I am now in good health . I was already retired and feel in the same form as before. If anything my CNS tended to look on the gloomy side . She certainly did not tell me what  I wanted to hear..

Thank you Nightingale19.  I am so pleased that you are well and leading a normal life again.  You have really helped me.  Take care and heres to the future xx

Just to add something about the Mirena coil-I had one fitted about 12 days ago to stave off the cancer until surgery was again available after covid19. Although I was  warned that there may be some bleeding, I wasn't prepared for how much and how bad the cramping period type pains were going to be. I rang the gynae nurse who said this was common, but it wan't until I actually thought about it being due to my womb lining reducing that it made sense! Usually I'm quite clued up about this stuff but my brain has been a  bit mixed up and emotional and I just didn't think it through. Shame the nurse never mentioned it either.

Today I was hanging out the washing and suddenly realised that the pain had gone, I hadn't bled all morning and actually even had a gentle bounce on the trampoline!

Had a little cry later though-but hey ho......

I know exactly how you feel Fenwalker.  Only when Lass explained it did I realise that the coil was working. However after a month I am still in pain and bleeding.  Hopefully this will stop soon.

So pleased it has worked for you.  Tears of joy I hope?  Take care xx

Hi everyone. What an informative and supportive site this is. Diagnosed 2 days ago with endometrial cancer had mri yesterday and nurse will ring next thursday with results. The waiting is difficult isn't it j was told I will have hysterectomy but due to the virus I really need to have open surgery under spinal....i wanted a anaesthetic go to sleep wake up but now this isn't an option.....the thought terrifies me. Has anyone else had open hysterectomy under a spinal plz ??

Heya Shell,

Your other option would be to ask if it can be delayed until after the virus has run its course. A number of ladies have had their hysterectomies delayed, and some have been given progesterone to help tide them over in the meantime.

I think if I were in your position, I would probably be looking for a delay rather than a spinal. Because even with a spinal, there's a chance you could end up needing a general. So I'd personally prefer to wait until everything was working normally again and I was more safe. But that's me!

Lass

xx

Good morning Shell56, did they mention a spinal block? To do the hysterectomy. If this is the case someone I know had her hip operation that way and they put injections down your spine and makes the area numb and so you shouldn't feel pain. You are awake of course and I know this is a worry but she said that there was a nurse talking to her all the time and she could talk with the surgeon. She did say you are aware of the op but shouldn't feel pain and to let them know how you are all the time so they can adjust things to make you as comfortable as possible they put up what she thought looked like a bed tray and put a sheet over it so she couldn't see what was happening. I hope this gives some reassurance. With open surgery there is longer healing and you are likely to stay in hospital for around 4-5 days seems average I have heard. Good luck with your MRI results. The decision in the end is your to make but there is options for you ,so don't feel rushed into making a decision right now.

Yes under a spinal block. Nurse is to ring next thursday with my mri result and that result decides which hospital I go to. May I just think everyone for their replies and support.

Shell