Hi,
I aren’t sure where I can ask for advice, I know CIN 3 is not cancer but I’m scared so I’m hoping there’s someone here who could offer me some advice;
Four weeks ago I went for a colposcopy, the doctor said the smear referral was due to High-Grade Dyskaryosis with ?invasive squamous cell carcinoma. She performed the LLETZ procedure during the colposcopy. This was after my first ever smear at the ripe age of 34 due to my ridiculous fear of going.
Today I received a letter saying that the summary was;
CIN 3, not completely excised at all margins.
We will be discussing these results at our next colposcopy Multi-disciplinary meeting.
I don’t know what the meeting is about or why my results will be discussed does this mean there was a discrepancy in results? I did the silly thing of googling it all and now panic has set in.
Any knowledge of what happens next would be amazing.
Thank you
Hi Elderflowers
Good to see you’ve joined us here and welcome to our group.
I’ll try and go through the points you’ve asked about, and hope this might manage to reassure you a little about what’s happening.
First of all, I’m sorry to read you had put off going for your cervical screening due to your fear of it, but believe me this is very common and you are not alone so please don’t feel guilty about that. The main thing is that you’ve now had this.
The high grade dyskariosis identified means that some abnormality in your cervical cells has been seen, which is very common, and the colposcopy was done to examine your cervix further, with a LLETZ performed to removed and abnormal cells.
As you’ve correctly said, the CIN identified is not cancer but the cells removed are analysed in the lab. When the cells are removed, the doctor is looking for clear margins-this means that they want to see a margin of healthy tissue removed around the abnormal cells to ensure the cells have all been successfully taken out.
Your letter had identified that CIN3 was present, but it hasn’t been successfully excised, which means that they didn’t manage to get this clear margin they were hoping for with the LLETZ.
It is standard for these types of results to be discussed at a multi disciplinary team meeting to decide what the next course of action should be. It doesn’t mean necessarily that there was any discrepancy in the results, but with CIN3 being the highest level of abnormal (pre cancerous) cells, there needs to be a discussion on the next steps needed.
It may be that the decision will be that a further LLETZ is required to try to get clear margins, but it’s difficult to anticipate what may happen. I’d recommend not going to Google for answers as it rarely helps, and tend to make you more anxious as you have found.
Once the mdt has met, you will be advised of the outcome either by phone, letter or in a face to face appointment. It may be that you will have another colposcopy, or it may mean another LLETZ. With CIN3 being the most serious level of abnormality, the tendency would be to try again to remove more tissue so that things don’t develop any further.
Hopefully you’ll not have long to wait for your outcome, but I can appreciate it will be a worrying time for you. Feel free to ask any more questions here, but also don’t be afraid to ask for clarity from your doctor if there’s anything you’re not sure of.
Sarah xx
,
Thank you for your response,
I have an appointment next week after the meeting they had to further discuss my results and management plan.
Very apprehensive about it, I thought I would just be referred for another LLETZ I don’t know why, could this possibly be what it’s for?
Hi Elderflowers
It could be, because you didn’t get clear margins with your previous LLETZ.
But it may be because the doctor wrote “?invasive squamous cell carcinoma”, which means the doctor suspected there might be cancer there and this has been found in the results from your previous LLETZ.
However, it’s impossible to guess at this point I’m afraid, so you need to attend the appointment to see what the next steps are. I hope it’s nothing too serious for you.
Sarah xx
Just a little update,
they held the MDT meeting and they found cancer cells, they are confident it was all excised in the LLETZ so diagnosed with stage 1A excised at all margins. Went back for a repeat colposcopy and LLETZ but the doctor couldn’t see any abnormalities so gave me the option to come back in Feb for a test of cure rather than perform the LLETZ. Any ideas if this is another colposcopy or LLETZ? Doc was very vague. I’m still getting all the symptoms would they not just stop if I was alright?
Hi Elderflowers
It’s a good result to have achieved clear margins with the LLETZ and for nothing further to have been seen. The test of cure is another colposcopy and test to see if you are hpv positive or hpv negative. It would be quite normal for a LLETZ not to be performed now since no further abnormal cells have been identified.
What symptoms are you still having, and did you tell your doctor about them?
Sarah xx
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