Very confused, anyone in the same position?

Hii All,

i’m new here and very new to all of this so as you can probably imagine, I am very confused and not quite sure what to think!

I had my very first smear in April 2017 aged 31 (I know, I shouldn’t have put it off for so long but life just got in the way and it never seemed that important, my God have I learned my lesson!). It came back with severe abnormalities so I had a colposcopy with LLETZ on the 1st June. The results from the LLETZ showed high grade (although I wasn’t told a number) CIN and CGIN with a small area of cervical cancer. I wasn’t told anything about staging etc but was told that they were sure they had clear margins so had removed all the CC. I was told my case would be discussed at the MDT meeting on Monday 19th June 2017 and I would hear back that afternoon.

The nurse who performed the LLETZ procedure said I had nothing to worry about as the cancer had all been removed so the doctors at the MDT meeting would probably just ask for a repeat LLETZ to be performed but she would contact me to confirm.

I’m a little confused as, after my LLETZ procedure I was told by the nurse that often, when cervical cancer is diagnosed, an op to remove the cervix (can’t remember what it’s called) or a hysterectomy are usually offered as the recommended treatment However she has now said this is not the case. I have never wanted children and I have had many problems relating to my reproductive organs over the years so, as odd as it may sound, with the added worry of CC I would far rather have a hysterectomy than risk the cancer coming back/not to have all been removed but the nurse has now said that this quite probably won’t be an option Despite me being diagnosed with cervical cancer.

My question is, has anyone else been in this position? What can I expect from the results of the MDT meeting? I haven’t been referred to an oncologist or anything which strikes me as a tad strange (my Dad has been battling cancer for over 7 years now so I know you’re usually referred to an oncologist asap after diagnosis even if they think they have removed it all). What can I expect? What next? Sorry for all the waffle and everything, I’m just confused and trying to make sense of it all.

Hi :-)

Sorry to see that nobody has answered this one yet. I'm afraid that with the NHS being in the state it is in you can't simply request a hysterectomy just because you want one. It is a huge operation and not something to approach lightly at all. If it is not essential you won't be offered one and by the sound of things, it is far from essential. The situation may change if you continue to have cervical abnormalities but for the time being, if you have been cured by a LLETZ you have much to be grateful for :-)

Be lucky :-)

Thanks for your comment Tivoli. Following my post a lot has changed, the consultants reviewed my case and have suggested a hysterectomy as the best course of action. There was obviously some questions regarding my results so the sample was looked at again and they found that there were two sites of CC staged at 1a1 with adenocarcinoma in situ as well as high grade severe CGIN CIN and CIN1. Whilst they felt they had removed the majority of the affected areas they could not be sure to have removed everything with safe enough margins so, I am seeing the consultant on Thursday to discuss the operation. Terrified of the operation itself but otherwise I'm ok. It almost doesn't feel real if that makes sense?