Stuck in limbo

Hi ladies. 

I've been reading,  getting guidance & support through all your posts over the last few months so thank you all! 

I'm 7 weeks post laparoscopic, total hysterectomy with vaginal cuff removal. 

I had some early cervical cancer cells removed during a large loop excision back in April. So the hysterectomy was to clear CIN & VAIN 3. 

The morning after my TH I spoke to the surgeon. He seemed positive that he'd removed all the cells and told me he couldn't see any more cancer with the naked eye but would send some samples off to histology.

So 6 weeks later I go for my review meeting with my consultant. Taking gifts in thinking that was going to be it until my routine check ups.....wrong!! I saw a different consultant & Macmillan nurse. They told me the cancer has gone which is great news! .......But .... unfortunately histology found some more cancer cells in the samples from my hysterectomy. So they couldn't say what stage I am ( 1A/1B) They were going to discuss this in the MDT meeting and let me know the results. Either hysterectomy would be enough, or they will need to do further precautionary treatment. This could be either lymph node removal or radiotherapy/chemotherapy. They would call me to let me know the outcome. Yesterday they called me and they are still undecided. They are going to send my results to another lab, for them to check it. Apparently I'm on the cusp of either stage and they are trying to make the right decision but they cant come to an agreement. They are going to discuss it again next week and call me into clinic on 2nd September ( the day I'm due back to work... I'm self employed) she did say that I should prepare myself for further treatment. Because of my age they may want to do it to stop it coming back. We're booked to go to abroad for my brothers wedding in October. I'm so upset & cant stop crying at the thought of missing it. I know the doctors are doing all they can to make the right decision for me. But the waiting is so so hard. I just want them to say yes or no so I can deal with what's next. 

Has anyone else had to wait so long for a decision? If so, what was the outcome? 

Sorry to rant!! 



Feb 19 smear....abnormal cells & HPV found

Feb19 Colcoscopy,  5 punch biopsies taken.  Invasion suspected. 

March 19 biopsies confirm,   early stromal invasion and extension of lesion onto vagina

April 19  EUA, large loop & vaginal biopsies under GA

May 19 CIN unclear margins  & VAIN3 found. TH & vaginal cuff removal booked. 

June 19 Total hysterectomy with vaginal cuff removed. 

Still waiting for stage results and decision on further treatment. 



Hi T11

I’m sorry you are having to experience all this, it’s a horrible thing to have to deal with and waiting is, as you know the worst part.

I’m similar although slightly different, initially I had to wait on official staging, it took about 6 weeks. This was because I had visible growths on my cervix according to FIGO guidelines this would be a 1B, however the actual cancer measured 2.5x5mm so 1A1 size, as I did not have clear margins it was decided following discussion with MDT that I should have a second lletz to check for further invasion and confirm staging. My second lletz was clear -yay! I’m having a total laparoscopic hysterectomy soon as a precaution, I had adenocarcinoma which is glandular. 

My diagnosis was 9th May and I got final staging results on 3rd July. I suppose more like 8 weeks. 

Don’t apologise for ranting, this is a safe place. We’re all here to support each other.





Hi T11, 

rant away! It’s necessary sometimes and we all have moments like that,so it’s best to get it out. 

I know what this feels like as the waiting is the worst and you just want the stage and plan, so when there is delay or uncertainty it can play havoc with your mind.

I had s similar situation in that at EUA I was a 2B but radiologically was staged at 1B1. They gave me the option to decide on treatment- I was a mess and went back and forth. The surgeon decided to do a look and see ( do another EUA, camera keyhole, laparotomy to have a good look, node dissection)and do the hysterectomy only if she was convinced it was the right way forward. Going into surgery I didn’t know what I was waking up to. On the day of the op I had a different surgeon, a kind of second opinion. They did the above and decided a RH was the best treatment. 

I do know how hard it is and everything seems to keep changing,but they are seeking a second opinion to give you the absolute best treatment for you to beat this.

It is hard and my heart goes out to you, especially with your brother’s wedding coming up. Just know they will be doing everything they can to get you the best outcome and keep hold of that.

I wish you nothing but the best and send huge hugs your way xxx