Repeat LLETZ

Hi, I'm new to this forum and a bit confused about my colposcopy results. I had a standard 3 year smear in april which came back abnormal. I was asked to have a colposcop, at the colposcopy the nurse said she couldn't see far up my cervix because it's tilted so she said she would take a biopsy anyway. The results of the biospsy came back saying 'shown CGIN - Incomplete excision at endocervical and stromal margins'. There was a MDT meeting held to review my case and figure out what to do next. I've just had the results of that meeting and I'm being invited back for another LLETZ. 

 

My questions are firstly, what does the part I quoted mean anyway? Are they looking for more CGIN at the next biopsy? How will they know they have got it all if they can't see? I've tried to call them to ask questions but they never answer. Does anyone have any advice or have been through anything similar? Thanks!

Hi, I think you may have accidentally confused some terms. You said you have had colposcopy and biopsy and been invited back for another LLETZ. Colposcopy is visual check, biopsy-sample taking. LLETZ is an actual treatment where abnormal pre cancer cells (CIN2 and CIN3) are removed. These are three different things. If I understand correctly they have invited you for another visual check where they may have to take biopsy again in order to clarify changes on your cervix. CGIN in comparison to CIN are changes inside of your crrvic not on the surface she it kind of makes sense?

is LLETZ the same as LOOP? Because that's what she said I had. I had an injection to numb the area and then was told I cant go swimming or have sex for 6 weeks. what usually happens at a standard colposcopy? I just looked at my letter and it says I had LLETZ. 

They use lletz as a diagnostic procedure too - it's essentially just taking a bigger chunk off than a punch biopsy to send off to see if they can find the abnormal cells. As it removes them it's also a treatment in itself, so kind of a two birds with one stone situation.

I also have a stupid wonky cervix and they couldn't see anything wrong at my numerous colposcopies, so they did two lletzes (if that's the plural?!) to remove deeper and larger samples for biopsy as the punch biopsies didn't show anything and they didn't know where they were looking as nothing showed up with the liquids.

The bit about incomplete excision and margins means that the bit they removed is showing abnormal cells right up to the edge of the sample, which means there is likely abnormal cells still remaining in the bit of your cervix right next to the bit they removed.

To be sure they've got it all out, they want to see clear margins - this means that the abnormal cells should be surrounded by nice healthy cells, because then the cells remaining in your cervix that were right next to the bit they removed will be nice healthy cells too so they know they've removed the whole area of cgin. Does that make sense??

I had two lletzes and the second wasn't any worse than the first so try not to worry, they just want to go again to make sure they've got it all out xx

Thank you for your comment. That does make sense.i think if the second LLETZ comes back without in clear margins, I'll ask for a hysterectomy, I know that seems drastic but I'd rather not keep having treatments. Did your 2nd LLETZ come back with clear margins?

My first lletz didn't actually find anything at all, so the second was done under ga so they could go deeper - that one came back with clear margins but I've just had my 6 month smear and they've found low grade changed this time so off I go back to colp in a couple of weeks :( 

I feel exactly the same as you - I asked for a hysterectomy last time as just wanted it sorted for once and for all but they said no. I plan on asking again (begging if necessary) when I go back to the hospital this time xx

What were their reasons for saying no to a hysterectomy? 

I've just turned 34 and have no children, so despite the fact I have never wanted them and am absolutely certain that I don't ever want them (and neither does my partner), they very patronisingly refused to discuss or consider it unless absolutely necessary as an option of last resort, 'in case you change your mind.'

I'm still quite annoyed about it (especially now it's bloody come back).  I just want this whole thing over and done with so I'd be much happier if the entire problem area was removed even if just as a preventative measure.

I'll see if I get a different answer this time around - I don't know how often it has to reoccur before hysterectomy becomes the recommended approach xx

Yeah, I really don't want to keep going back. I feel like I'm waiting for cancer. (Sorry if that sounds dramatic!). You would think that you would know at 34 if you want children or not. How patronising! Perhaps if they see you haven't changed your mind, they might consider it. Good luck!