Please advise because I have no idea what to think :( I have just received my LLETZ results over the phone and I'm very confused and please, hopefully you can clarify to me more because when being given results on the phone questions do not come fast enough and now I feel I havent asked everything. Let me outline everything from the start: I had my smear in September and it showed hpv positive and high grade moderate dyskaryosis. Then I had colposcopy and biopsy was taken which came back as "CIN2 with focal grades of CIN3 and CIN1". Then I had LLETZ 4weeks ago and was told that the area got smaller since my colposcopy, I found it strange and shocking as I expected it to grow but nurse said that it is smaller probably because it healed after biopsy?
Today I got results I have never ever expected and cant understand: nurse said it came back saying there are no abnormal cells in my specimen! How???? And that it will be reviewed at mdt meeting and I will be informed of the outcome. Could you please explain to me how it is possible that biopsy said cin2 and cin3 and now after lletz it says there are no abnormal cells. She said its good news but if so then why my case will be discussed at mdt meeting, i thought they discuss bad cases??
I feel very strange, also 12mm of my cervix was removed and I am getting quite upset so much was removed unnecesarily? Also, does this mean its still not the end if there will be mdt meeting, what possibly can happen next in this case? I really wanted to put this all behind me now but does this mean that there will be more visits to hospital for me or treatment? Gosh, I wanted to close it all and there are still questions? I just wanted a green light "all good" but is this the case if they still want to review it?? Also, is 12mm a lot? Seems a lot to me and I am upset I have now been put into increased risk group and there was no abnormal cells there, i feel like i have been put through all this trauma unnecessarily :(
I just feel so lost and shocked and totally not knowing what to think, how can there be nothing and so much of my cervix removed for nothing??
Disclaimer; I am not medically qualified but I did learn from my own experience that wherever there is a discrepancy in results they are discussed at an MDT meeting. Also from what I can gather your body's immune system may have destroyed the abnormal cells (maybe triggered by the wound caused by the biopsy). The biopsy itself may have cleared the worst cells. Again I am not a Doctor. Your own medical team would be the best qualified to explain. It sounds like they think it is good news - at the MDT meeting they will come up with a treatment plan for you - even if that is a watch and wait to ensure the cells are going. They will no doubt contact you again to let you know. You could try phoning them again to clarify or you could e-mail the Ask the Expert on here or contact the helpline by phone or e-mail. The colposcopy team are experts and follow protocols set out by NICE. I hope this information makes you feel better ! Have a little treat to celebrate what sounds like good news. Big hugs A x
Im just really shocked because I was expecting confirmation that its cin2 or 3 and all i wanted to know is that there are clear margins so this totally shocked me.
First surprise was when I went to have lletz and she said that in 7weeks between biopsy and lletz, its got smaller, i thought this could only get worse. But never expected to be told there was nothing?
Dont get me wrong, i know i should be happy about it and i am but i also cannot help but be a bit upset that my cervix has been removed for nothing☹ and that i went through all this stress and trauma of procedure when there was no need??
You mentioned my immune system- when first i found 3months ago that i have abnormal cells i was so upset my immune system let the virus stay so long that it chamged my cells, then how come now it started fighting it? God its not logical?
She did say at lletz that it got smaller probably becayse of healing after biopsy but i thought there was still an area, honestly i cannot comprehend it all.
Hi Firefly I also felt very confused about the discrepancy in my results however my colposcopy consultant took an extra thorough "belt and braces" approach for which I am very grateful. I took to writing down any questions I had before my appointments so that I would be able to clarify what I could. Like you, it took me a while to get my head around it all. Remember each individual case is different and so your treatment plan could be very different from mine. If I were you I would sleep on it, think it through over the weekend, write down any questions you have and contact your hospital team with any questions you have or contact Jo's. Give it time to sink in. Remember the hospital are on your side and want you to be well. They are experts in their field and know what they are doing. I hope this helps. The emotional rollercoaster which goes with this is quite something!!! Happy New Year - let's hope it is healthier too !
I have read loads of your advise to different posts on here for the last 3months since I got abnormal smear result. Cant believe its been going on for so long!
So thank you for all your advice, now and going back through last 3months, even taken from other women posts, you were always there;)
I really just didnt expect to hear there was nothing found. Ok, she said before procedure that it shrunk since colposcopy and biopsy but never ever thought to hear that in that big chunk she took there was nothing.
What was the point of it all, all the tears, stress and losing quite a bit of cervix to find theres nothing there, sorry i repeat myself but somehow the hardest part for me to deal with is the fact of losing part of my cervix?
Again not a medical expert but I also believe that the cells can rid themselves if they aren't too bad? I only say this because I saw the oncologist yesterday and he was talking about CIN cells and he mentioned to me that with CIN 1 and 2 they will sometimes 'watch and wait' because it sometimes goes on its own? I agree with another poster above that I think if there is a discctpeency between smear/biopsy/LLETZ results then they have to discuss ag MDT just to make sure they are not missing anything important. In terms of you having the LLETZ anyway, yes it's annoying if it wasn't needed but they wouldn't have done it unless they thought you could have been at risk, so try and take comfort that you've had a really good MOT down there :-)
Despite all of this though, I am sorry you've been left in limbo wirh not the full facts. That kind of happened to me too and it's really really not nice. I think you should write down all your questions and then call the colposcopy clinic tomorrow and ask. They can hopefully get someone to come back to you and answer your questions. Not an ideal way to start the new year but try and stay positive till you get some answers x
My biopsy said cin2 and 3 and I was all set for lletz to confirm it, all i wanted was to know margins are clear. And yes, nurse during lletz said it got smaller after biopsy but I never expected it will come back as clear?
I really dont want to be get wrong that im not happy because i am, i just feel a bit like i lost all that cervix for no reason and it upsets me.
Last 3months of all this going on really messed me up and i dont know why i find it so hard to deal with it especially with the fact they removed 12mm of my cervix, please tell me something that will get these thoughts out of my head? i feel like i got damaged there now and im in risk group now? i was always the one with attitude towards smear tests "just get on with it" and this whole thing put me into such pieces that i dont think i will "just get on with it" anymore?
I think I wanted to see it confirms what biopsy said and that all this stress and tears of last months and losing cervix wasnt in vain...
I just cant believe how it could turn out like that if i was told im cin2 with bits of cin3
I appear to have had HPV for a very long time as my immune system is unable to clear it up. I asked my colposcopist why I can’t get rid of it etc and she told me the following: in some European countries they actually use the punch biopsy as a cure for HPV, somehow having this done kicks the immune system into action and it gets to work on the HPV and clears it up. Again, I’m no professional, and I don’t know the success percentages of this, but maybe it’s relevant to your experience.
They wouldn’t have done the Lletz unnecessarily, I know all this is incredibly scary and stressful but it sounds like they are looking after you.
Im just so shocked because of all outcome possibilities this one has never and would never cross my mind!
The nurse said that looks that this is what happened that biopsy wound triggered my immune system to work and I just never thought that can happen.
Was upset for months that my body let hpv sit there for ages causing cells to go abnormal and my body just let it happen and now it just woke up to action?
Im still really shocked.
Wonder what MDT meeting will say about it but unfortunately I dont think i will get these answers very soon.
Sorry that I went into bit of upset that maybe i could have avoided lletz if nothing was found but then the nurse said that i coulfnt because biopsy said theres cin3 and in this case they just had to do it.
This is my first post - I have been reading this forum since September 2020 when I too received the dreaded phone call after my smear test to come for colposcopy. I'm replying to you today as I have a very similar experince to you and had my Lletz results today over the phone saying they didnt find any CIN :( I havent seen anyone else with this experince and I can really relate to how you say it made you feel. I know it was a few months ago now and wondering if you had any updates from your doctor? I too cant really feel happy about my result as I was expecting clear margins anyway as my doctor said je did a good job..the awful feeling of loosing cervix unnecessarily is overshadowing any good news and like you, I did not know this was even possible. All I know is they suggested to me the biospy I had before Lletz confirming CIN2 may have removed the area. But this makes me question why then did the doctor not mention he may have done this? Did they not look at the area in theatre - I had mine under GA - before doing the Lletz and see it was gone?!? I am extra distressed by this I was very clear from the start I was against the Lletz procedure and only wanted it is absolutely necessary. I even said can I just wait till it gets to CIN3? No they said. And now this :( I put the Lletz off for 6 months as I was so reluctant and now feel like I should have stuck with my gut feeling. I was never told CIN2 could go on its own only CIN1, and obviously no indication it had been removed during biopsy. It's devestating, and its easy for others to see the bright side that at least its cleat, but the stress of worrying, the stress of deciding to go ahead, the stress of the procedure and hospital admission and subsequent post op infection making me feel awful for 2 weeks! All for nothing. Except the increased risks it brings. They told me they removed a big area from my cervix during Lletz, they said a thumbnail size such a waste. If only they had checked somehow before surgery :( Just wanted to say I understand how you feel :( and I just don't know how to process this.
such a waste. If only they had checked somehow before surgery :( Just wanted to say I understand how you feel :( and I just don't know how to process this.
