New and frightened

Hello

I had a smear test in August 2015. Results came back in October as being boarder line changes with HR HPV and they sent me to get a colposcopy. Off I went, had colposcopy in November. Didn’t have any treatment as the doctor felt it was only mild changes and that I would be recalled in a year for follow up smear. However she did take a biopsy.
Then got a letter saying the biopsy had shown up CIN3 cells and I went in to have LLETZ on 21st. That all went fine. The doctor was very nice and was over in 15 mins or so. He also took another biopsy (which I assume is standard procedure?).
I asked him if he thought everything as ok, and what tHe second biopsy was for. he said that he couldn’t answer delfinatively but that the removed cells would paint a clearer picture, and make sure that they were CIN3. He was as reassuring as he could be, and I understand that he couldn’t say that I am home and dry in case he is wrong. But he did say that obviously in a small proportion of women the second biopsy proves that it is something more sinister.

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” or cancer cells not being detected during initial biopsy or lletz procedure. I notice that some women in these forums have in their signatures that they were diagnosed after their LLETZ, so I presume it must happen.?

Could anyone tell me their experiences? Has this been the case for any of you?
I realise that the only way I will know for sure is to get my results from the doctor, but would love my mind to be put at rest, and someone to tell me to stop being rediculous!

Thanks.

Just wanted to send a big hug, sure everything will be ok but I know how emotionally it effects you. Xx

 

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?

Bahar

Thank you Monster. I appreciate your words of encouragement. I know it's silly to get myself in a state without actually having the full facts in front of me, but you are right. I didn't expect to feel this scared or all over the place. X

Thank you for this! This is very reassuring, and so logical and straightforwardly explained. I really appreciate that. 

This really has made me feel so much better and at ease. 

They gave me a letter saying it could be 6-8 weeks before I get results. thats quite a long time to be on edge, but I am sure that the doctor would have rushed it through if he had have thought anything was amiss. Like you say, he is a professional and looks up lady parts for a living, so he knows what he is about! 

I will really try my best to not get carried away with myself. No news is good news. 

Thanks so much again. Xx

The wait is so horrible especially over Christmas - went through this last Christmas after punch biopsys fortunately they were clear - though am on the same merry go round this year after a high grade smear in September - 2 x colposcopies with clear biopsys but scheduled for lettz and laser under GA on the 4th Jan. 

Sending you lots of positive vibes - as with myself am sure they are just covering all bases xxx

 

Jane x