Age 50 no clear margins but being left for 6 months! Can’t stop crying And worrying

Good morning lovely people
I’ve been on here before and had some great advice and reassurance so I’m back :weary:
Quick re cap, age 50 SMEAR 2021 HPV but no abnormal cells. Repeat smear 11 months later and HPV and severe cell change so had the surprise text for a colposcopy , hadn’t heard of these before and thought it read colonoscopy :grimacing:
Anyway, had LLETZ with extra top hat ( wasn’t painful) then waited for results.
Confirmed CIN3 but removed tissue had no clear margins so they were discussing at MDT.
I had just missed their 4 weekly meet so it was a painful 3 week wait to know the outcome!
I had the letter on my hospital app yesterday.
No further LLETZ needed and see you in 6 months for a colposcopy!!
I’m so confused as what I read on the GOV website that they link in the letter is that age over 50 with no clear margins further treatment needed to remove any more residue abnormalities??
Well I’m 50 in feb 23 so my first thought was maybe I’m not officially in the age bracket.?
I called the clinic and was told I would have a call from the consultant.
She rang. At 7pm and tbh I’m still not reassured She explained that after the loop removed the tissue it burns 2mm of the tissue that’s left. Basically she said fingers crossed this would of removed the rest of abnormal cells! I asked did she know that for sure and she replied I’m not God!! So basically NO she couldn’t reassure me that this would remove them so that’s why I’ll be seen in 23APRIL 23 to check!
I told her that I’m not happy to be left this long not knowing for certain but she replied that’s the MDT decision So though really!
Didn’t sleep last night, can’t stop crying and thinking about it! My colposcopy was noted as unsatisfactory because she couldn’t see the Tranzition zone and my worry is that if she didn’t remove enough tissue from higher up in the canal where all the AC are then there might still be a lot of residual AC up there I in the canal!
My mum wants me to ask about a second opinion but I thought I would ask you lovely people first xx sun one in the same boat and what was the outcome?
Thank you for reading
Love and light
Steph xx

Hi @Steffijo

Oh gosh i cant believe they have done this its not very often you hear that they dont remove left over cells this is a first for me, my results from a LLETZ didnt mention clear margins so when i enquired i was told not to worry because if i had any left over id of been called back as leaving any behind in their opinion was unethical… i agree with your mum, i would get a second opinion on this it doesnt seem right xx

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Hi @Tinkerbelle29 thank you so much for your reply x
Been busy working today which has kept my mind off things but I honestly can’t see me getting through 6 months of not thinking about it.
I also feel it was very rude of the consultant to say that she’s not god!

The waiting is definitely the worst part theres only so much we can do to keep occupied, but theres just no excuse for the way youve been treated, yes she may not be god but being a doctor is the next best thing we are supposed to be able to put our trust and confidence in that were getting the best treatment/monitoring possible or at the very least that they give us some reassurance xx

Did they confirm what type of CIN the margins were affected by? Or did you receive the actual LLETZ results?

When I had my LLETZ, I had a mixture of CIN 1, 2 and 3. I didn’t have clear margins (and they specifically said they tried not to remove too much as I hadn’t had children yet) but the results showed that, although some of the part they cut off was CIN 2/3, the margins were impacted by CIN 1 only. Just wanted to check if there was some logical reason why they have made this assessment?! Because otherwise I agree with the above posters, I’ve never heard of not being given a follow up LLETZ if there were unclear margins - especially if you are past child-bearing so aren’t concerned about the impact on fertility!

This is what is confusing me,

I had Lettz in April and my letter said follow up 6 mth with coloscopy so I assumed clear margins otherwise I would have been called back

Had my check up last week and I asked and she said there “were still a few CIN” in the margins or something along those lines so I do need to call them and double check again, she didn’t sound very clear and I left a bit confused. She took 2 biopsies but said it all looks fine but they do it to be on safe side because if smear comes back HPV I would have to go back again it makes sense to do all the same time

That does all sound very confusing! I would try and get some further information about the results from the LLETZ - if there was any doubt that the margins were affected by CIN3 then I think they should have given you another LLETZ and not just let you sit and wait for another 6 months?! Sounds like their communication has generally been very poor…sorry you’re having to deal with this.