Were you restaged post hysterectomy? Just curious

Hi MarmiteFan59,  I was never told a stage until after my hysterectomy histology results. I was told after my D&C that it was grade 2 borderline 3. Then after the histology results I was told it was Grade 2 Stage 1B with vascular invasion.

Marmite Fan, I was never given any staging till histology results arrived. I was just told it was at an early stage. This was probably because I never had CT or MRI scans before my op. Grade one cancer cells were picked up at a transvaginal scan with a biopsy taken at the same time. That was it, decision made that it could all come out! Can’t say I’ve missed any of it!

Hi Marmite Fan

The answer in my case is Yes I had vag ultrasound and MRI pre op and was staged stage 1B grade 2 Adenocarcinoma Post op I was regraded stage3A  Grade3 The tumour had penetrated the uterus wall which surprised my surgeon as this was not obvious on the MRI but as he pointed out MRI scans ars not derivative Luckily there was no sign of cancer in the pelvic lymph nodes and no LVSI evident and for this reason I decided to take a chance and declined the offered pelvic radiotherapy I was monitored by my onc surgeon for five years and Eight and a half years I am hopefully cancer free but still vigilant I do not wish to influence any one re adjuvant treatment as so much depends on personal circumstances 

Best wishes to all the lovely ladies on this forum And hope you are as lucky as me The advice my surgeon gave was to enjoy life and to be vigilant but nor obsessive

petronella

Should say MRI scans are not definitive Hate autocorrect 

I was provisionally diagnosed at Stage 1a and Grade 3 - the grading was due to having a mix of endometroid and serous cancer. After the total hysterectomy in October the staging and grading remained the same. The cancer had not breached the wall of the uterus and there was no lymphadenopathy. I'm about to have PDR brachytherapy as recommended by the oncologist to - hopefully - reduce the risk of recurrence in the pelvic area. I've not yet had any discussions about any additional treatment after that.  I'm also waiting for results on tests for Lynch Syndrome. 

Hello SH53 

Can I ask if you were offered chemotherapy at all? As it seems we are in the same boat, only I was told that LVSI can never be completely ruled out and too small to be picked up on scans and therefore was up to me if I wanted to take Chemo in case any stray cells left behind. 

It seems different hospitals do different treatments for  Grade 3, another lady member on here with Serous  was advised that brachytherapy is no use unless you have vaginal cancer?

I'm confused! 

Not as yet, I wondered if this might be discussed after the brachytherapy? I'm willing to try anything which gives me a chance of longer term recovery. As I'm in Sheffield I'm receiving my post op treatment with a consultant at the Weston Park Cancer hospital so feel comfortable with his advice. His view was that the pelvic area is the first area the cancer might return to after the op. It's interesting to read all the experiences and different approaches of the ladies in this group. I'm sure the one thing we have in common though is the hope of a positive outcome! 

Well done to you on your long term recovery. As a stage 1a grade 3 patient myself it's encouraging to hear of such a positive outcome, although I realise we are all very different. 

Hi marmite,

I was diagnosed in January, thought to be 1a, only tests were womb biopsy and vaginal ultrasound scan. Total hysterectomy 03/02/22. Lab tests on taken womb showed aggressive cancer and ? Lymph node involvement. Further surgery for staging and pelvic node dissection and they found new tumour growth ( which obviously hadn't been there at 1st op). MRI and pet CT showed progression into pelvic bone and lung. Staged at Grade 3, Stage 4b at the end of April.

Took a while to get staged but it's the worst stage you can get, there aren't anymore after that. I often wonder if I had had more scans at the start prior to surgery, might I have been a bit luckier. I think this cancer caught them out though as it is rare and I don't fit the usual patient profile.

A x

Hi SH53

I was interested in your comment that recurrence was usually in the pelvic area My very experienced onc surgeon told me recurrence was usually in the vaginal vault but the oncologist wanted me to have 25 fractions of pelvic radiotherapy I felt brachytherapy would have been more appropriate but I am not an oncologist Adjuvant therapy appears to be so divisive it is very difficult to decide on the best course especially when the experts give conflicting advice I am sure they have our best interests at heart and want the best possible outcome but medicine is not an exact science unfortunately

Best wishes for your future

petronella