Advice: What's next? 1a1 cc (removed?) CGIN no margins

Hi all,

 

I have found much comfort in this forum over the past few months, as I'm sure many people have.

  

I wonder if anyone is/has been in a similar position to me and can give me any advice. I had copolscopy, LLETZ and biopsy on Sept 10th following a Smear test showing high grade dyskaryosis. The nurse/doctor performing the LLETZ seemed fairly confident that it  all looked very typical and that she had got a good margin.  I waited for 5 weeks for my results and figured that the timescale meant everything had been removed with clear margins. Unfortunately I was called back to see the consultant on 21st Oct. He told me the biopsy showed CGIN with no clear margin and that they had found a small patch of 1a1 adenocarcinoma on the previously removed tissue.

I had another procedure under LA - I'm not sure quite what as he didn't use the loop until he was cauterizing at the end and it has been much more painful recovery this time round. I only realised this in hindsight so didn't think to ask at the time. 

I asked what the next step might be and the consultant told me that there is such a variety of things that could happen that we will discuss that dependant on the results. The only reason I was able to be so calm at my last appointment when he told me about the cancer was because of this site. I asked for the definitions and staging and was able to see beyond the 'c' word because I was equipped with some knowledge. 

 I don't feel the same now. I'd really like to know - what are the potential results and the subsequent treatments? I have read everything from hysterectomy to more frequent smears.

 

Can anyone share an experience that might help me? 

 

Many thanks,

 

Hey there. I was diagnosed with 1a1 in July. I had cone biopsy under general anaesthetic where quite a large chunk was removed, results came back clear and I'm on 6 monthly checkups for the next year and then depending on those results at least yearly checkups for 9 years following that. I was told if my margins weren't clear after cone biopsy I would have a trachalectomy. So, if you've had another loop and it doesn't come back clear, cone biopsy might be the next step. Can't offer much more advice than that I'm afraid, it differs person to person. Good luck with it all, let us know when you get your results xxx