Hi Mrs Delaney,
Welcome to Jo’s. Sorry to hear about your situation, it is not a fun thing to be going through especially over the holiday period. So one hugely positive thing that happened though was that they did the biopsy in the first consult even though they thought it was mild changes and they caught the high grade changes. It makes me sad when I read posts like yours because I see what lack of information that was provided to you- really I am sorry.
I will basically repeat to you what my doctor told me and what I discovered when I was going through the same thing.
He also took another biopsy (which I assume is standard procedure?). You are correct this is standard procedure; in fact the piece that is cut out in the LLETZ is the biopsy. The goal here is to cut out the affected cells with a little extra around the edges. Your goal is to get a result with ‘clear margins’ this was as described to me the “golden words”. It means that all the bad cells were removed and the cells at the very outer edge are healthy cells; meaning no bad cells have been left behind. The alternative is ‘margins not clear’ which means the cells at the outermost edge had bad cells present, thus there potentially could be bad cells left behind. The doctors doing these procedures are professionals so it is likely they were able to remove everything, however, this can happen.
But he did say that obviously in a small proportion of women the second biopsy proves that it is something more sinister. Easier said than done but I wouldn’t worry about him not being able to say to you right then and there that everything was fine. I had to have a cone biopsy under GA as I had CIN3/CIS covering my entire cervix and higher up in the endocervical canal crypts. My doctor also said to me, “I can’t guarantee this will be the last procedure as it may come back as something worse, but the chances are extremely small.” For malpractice purposes they can’t say you’re now cured as they don’t know for sure but the odds are extremely in your favor.
So cue frantic googling and getting myself wound up to find out what the probability was of me having cervical cancer when my initial smear was "borderline. A lot of the ladies on here will disagree with me about googling because it really does stress you out. But I am an academic and basically it is my job to research and I definitely could not stop myself. I looked at journal articles, medical journals, and asked for support on Jo’s only. I found other forum posts only freaked me out, because a lot of people are misinformed. Basically what I discovered is that the Smear/PAP test is not a diagnostic tool, it is a screening test so it can pick up cell changes with certainty only, not say for sure the level of CIN. The grade of changes can go up and down with biopsy (mine went from CIN2/3 to CIN3 and CIS. My friends went from CIN2 to CIN1). The punch biopsies you had at your first consultation are actual tissue so it is able to show exact changes for that exact tissue sample. This is why they apply the acetic acid to the cervix to identify the areas that are most affected so they can sample them, not healthy tissue. So basically don’t be concerned about the pap smear result changing at the biopsy level. It does not mean you have an aggressive form that is changing in days it means more likely that the PAP smear sample wasn’t of the ‘worst site’ or wasn’t done effectively. I had 3 pap smears in the 3years prior to diagnosis, but by a GP not a Gyno and obviously wasn’t carried out effectively as it returned nothing, yet cell changes were obviously there. I am only going to a Gyno in the future.
I hope this information helped a little. Even though my conclusion is the same as yours- that you will not be able to know what the end result is until you receive the LLETZ biopsy results. However; as mentioned, the chances that it is anything more than CIN3 is extremely low. Did they give you any indication as to when your results would be back?