Confusing LLETZ result

Hi all, I got the results of my LLETZ procedure this afternoon, with a mix of good news and confusion.

The good news is, the material removed is only CIN1 with no signs of cancer. This was the only thing said in what was to be honest a frankly evasively worded letter. No mention of any margins, or where the CIN 3 and CIN 2 had magically disappeared to.

I called the colposcopy department and asked these questions and was told that the report could be made available to me (I’d already had this conversation with the gyno at the appointment - I am a non medical researcher by trade and I like to have the full details of a situation rather than a summary).

Another letter appeared about half an hour later which essentially just said that it’s only CIN
1 and the advice is to have a test of cure smear in 6 months. The report was provided but the summary itself didn’t answer a single one of my very simple questions.

I was halfway through reading this letter when the nurse rang me, she was actually very nice and I felt awful but she caught me just at the moment I read that my margins weren’t clear, and also that the sample was substantially bigger and deeper than I was led to believe. Fertility is a real concern for me, I’m 32 with no children and I really, really don’t want another LLETZ especially a massive one like this one actually was. I did blow up as I feel I’ve been treated like a moron the entire way throughout this process - I wouldn’t have been so angry that they didn’t get clear margins, I know they don’t have x-ray vision, but just answering this very basic question wouldn’t have insulted my intelligence.

No one has any idea where the CIN 2 and 3 has gone, or even if it was there in the first place: a hypothesis is that they were removed when the 5 biopsies were removed, which is possible, but again why can’t someone just tell me this? I have instated a lot of lifestyle changes and am taking papillocare, AHCC and 2 x doses gardasil 9 but would that really have made much of a difference in 2 months? My untrained eye thinks the images from the colposcopy show the lesion look slightly smaller, but the gyno said she thought it looked the same (but that was just when she was doing the procedure, she wasn’t comparing the images directly). My samples are going to be looked at again at an MDT as the LLETZ and biopsies don’t match but I’ve lost a lot of confidence in this process. It’s a real shame as actually my LLETZ experience wasn’t awful.

I feel very lost in all of this. If I’m now going to be swanning around with a load of CIN1 still stuck in me for the next 6 months, with a history of it not clearing before, I’ll just end up going round and round and being butchered all over again. The other side of me thinks perhaps it was CIN 1 the whole time and I didn’t need to deal with any of this (my initial smear was low grade). I’ve booked an appointment with my GP to properly discuss my results and options on Wednesday. I did also apologise to the nurse as I know it’s not her fault or her job to explain results. Has anyone else experienced similar, and what was the trajectory?

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Hi there, I just wanted to comment to say I’m so sorry you’re going through this.

I have also been frustrated with communication throughout. My letters have also been incredibly vague (and always at least 24 hours after receiving a vague “gynaecology follow up” appointment notification).

Does your hospital have a patient portal? I signed up to mine when I had biopsies on a breast lump last year, and it has given me access to the full histology reports. They’re locked for a while after they’re posted (three weeks from report date which is usually about a week from the appt) but at least it means you can read through all the results yourself for both the biopsies and the LLETZ.

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One more for good measure! I’ve just read your other post asking about whether anyone has seen a report showing how many of their biopsies came back at each grade and saw you didn’t have any answers. Maybe it’s irrelevant now but in case it isn’t, this was my experience.

My biopsy histology report didn’t break it down like that. It first had a list of the samples taken and their sizes, and then questions with yes/no answers. The questions were in relation to all samples and asked if CIN was present (if yes, also grade), if there was CGIN found (if yes, also grade), endocervical crypt involvement (yes/no), and some others including a comment section. Happy to get the full list if it would be helpful.

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Hi there, thank you so much for taking your time to reply and I’m so sorry that you’ve had similar struggles with the communication from the hospital (I also just get a load of random notifications which are just the same thing over and over which drives me mad, and also the random invites to appointments with no information attached, it feels like being haunted). It’s strange, I got the proper cytology report for my smear but for the biopsies I just got the snomed codes which I know how to look up and interpret but they really didn’t give any detail at all. The Gyno did receive the report that you describe but I had to basically talk her around to showing me it after my LLETZ (though she didn’t let me have a copy or look at it for too long which is a shame as I really would like to know which biopsy/biopsies were CIN3 and where they were collected from… it’s all just left me with more questions. I’m hoping my GP will be able to tell me more on Wednesday or at the very least will help me get more answers in time, it’s just all so strange and makes me wonder why they are being so evasive.

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Also just to say I hope all is well with you too, thank you so much for your kind reply I really do appreciate it :heart:

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That’s so frustrating, to be shown but only for a short time and no copies! I think sometimes the “don’t google, just trust us” advice works but it sounds like you (and this is true for me too!) find far more comfort in being able to read about exactly what’s happening. The more information the better, it’s the only way to keep the anxiety at bay!

Hope you can get some more info from your GP when you meet with them.

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Thank you, I’ll let you know how I get on. I absolutely agree, I think it depends on the kind of person you are but for me personally what drove me mad is that they wouldn’t answer the question directly so I had to make that assessment myself. If they had just said “unfortunately two of the margins still contain CIN 1 cells but these are likely to resolve themselves by the 6 month test of cure smear” (if this is the case, they haven’t directly said this at all, this is the gist of what they were implying) then I don’t think I would have been as enraged. I felt like I was being patted on the head and told to go away. I think transparency is the key here!

Just to follow up, I spoke to my GP today who agreed that I deserved a proper answer and reasoning for this, so she is going to contact the gyno and hopefully get a decent explanation on my behalf.

I also found a study that indicates that this is not uncommon and it’s likely I’ve had this treatment completely unnecessarily. Yay

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8848493/

I don’t blame the gyno if this is the case as she was relying on the evidence she had at the time which all pointed to CIN3, but I do feel pretty awful that there’s a reasonable chance all of this pain and stress and potential damage to my body could have potentially been avoided. Yes I’m hugely grateful that I do not have cancer, but part of me feels a lot of regret and confusion.

You did well to be persistent and get a bit more clarity, and to have done your own research too.

Thanks for posting the link to that study. It’s sobering that there can be so much variation between the results of a punch biopsy and the results from the LLETZ/LEEP* treatment. How frustrating. We get so anxious about our results and it doesn’t help to think that they might not be accurate and that we may therefore not be getting the appropriate treatment and could be under-treated or in your case over-treated. Sigh.

  • Large loop excision of transformation zone (LLETZ). Also called loop electrosurgical excision procedure (LEEP).
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It is sobering to be honest, but in a strange way I find it a slight comfort (or perhaps more depressing?! Mixed feelings) that this is not a completely bizarre occurrence, and a tiny bit of hope that at least researchers are identifying this as a problem so hopefully maybe sometime in the future something can be done about this, which is why I posted it. I’ve calmed down slightly now (it comes in waves really) and I’m thinking at least the CIN1 is almost totally gone which gives me better odds of finally clearing it, and genuinely I’m not playing the blame game here as the gyno had every reason to do what she did with the evidence provided, but I do wish sometimes that things could be just that little bit clearer and more linear. Thank you so much for taking the time to reply and hope all is well with you :heart:

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Wow that is an eye-opening study! I have been weighing up the chances of results that differ from biopsy since I had the LLETZ. I’d chalked it up to general results anxiety, but it seems that you’re more likely to get differing results than confirmation of biopsy results!

It’s interesting isn’t it, I was trying to find anecdotal reporting on here and wasn’t having much luck which made me feel a bit concerned to be honest but dug a bit on pubmed and thought it was worth sharing. In a strange way it’s put my mind at rest that I’m not some really bizarre anomaly :joy:

Just to caveat this is a single study and I’m not a medical professional, there may be other findings out there but just thought it was worth sharing for now.

Totally get what you mean! There’s safety in numbers, and knowing that the discrepancy is common makes you feel less like a medical anomaly!

I think that study shows that we have an awfully long way to go in cervical screening, but I’m so glad we have a system that catches so many before it becomes too sinister.

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I completely agree, on all counts, you’ve summarised it perfectly. If you are still waiting on results I hope you get yours soon and all goes well, thinking of you :heart:

Thank you! Waiting on LLETZ results, but I only had the LLETZ procedure last Friday so I’m expecting it to be a little while yet!

I only had mine Monday before last, so we’re in very similar positions! Hope you’re recovering well and that you get your results soon - I was quoted 4 weeks for results but mine came through bang on a week later which was super quick, hopefully yours will be quick too.

Hi. Wishing you all the luck in the world. I have been there and it’s not a nice place to be. Totally understand you. I have an appointment at the hospital next week for a smear following a lletz in November. Just hope it’s not cancer again. Last lletz results were cin 3 HPV positive.

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Thank you for your kind thoughts - I wish you all the best for your results too and will be thinking of you. This stuff is honestly awful and I’m so grateful that we have such a kind community here.

Hi @Ilovesquirrels! I’m joining your band wagon for confusing LLETZ results… my biopsies showed CIN2/CIN3 with endocervical crypt involvement and my LLETZ says… no abnormalities found.

They’re adding me to the next MDT meeting on 10 June so the waiting continues!

How are you doing? Have you managed to get any more clarity?