Recently diagnosed, waiting on staging

Hi everyone,

I’ve been using this forum as a really helpful source of info for a few weeks having gone through the smear / colposcopy / LLETZ process and ultimately last week having been diagnosed with moderately differentiated squamous cell CC (with some remaining at ecto and endo margins post LLETZ). The NHS have been beyond great at moving things quickly, and I’ve now had an MRI and a follow-up with colposcopy clinic where they suggested I might be able to get a second LLETZ under local (which I didn’t want, would rather under general as first time round my anxiety was through the roof). They did a quick check and even if I did agree they couldnt’ have done it then and there, unfortunately I have an infection which I’ll need cleared before they can do anything.

They’ve recommended a second LLETZ procedure to remove the cells, which seems positive so far I think in suggesting it has been caught early, though I haven’t been staged. I’m also conscious I’m 29 and no kids so they maybe are suggesting this in the first place before a potential hysterectomy etc.

Has anyone else been in this (rubbish) boat where you have MRI and the plan changes (e.g., MDT thought it might be LLETZ but actually they reach out post-MRI?). Or they provide you staging after MRI but before any LLETZ/op organised? Like others have said, the wait is killing me and given I’ve had the MRI now but may have to wait a couple of weeks I’m wondering if I’ll hear anything (reassuring or otherwise), and just want to get it over and done with. I’ve been reading into the words “moderately differentiated squamous cell CC (with some remaining at ecto and endo margins post LLETZ)” but really I don’t think I’ll know anything until I hear the results of MRI / LLETZ.

Thanks :slight_smile:

Hi, I’m so sorry to hear about your diagnosis. I don’t have much information to offer, but I wanted to say that I’ll be thinking of you!

Did you find out about the CC post-lletz? What were your smear results if you don’t mind me asking?

Thanks that’s very kind. :slight_smile:
Yes, I was told after the LLETZ.

My smear was CIN2, I had a colposcopy with biopsy a week or so after smear results, and the biopsy results were about 3 weeks which showed CIN3. Then LLETZ came back with CC. Are you waiting on LLETZ results?

I hope someone else can help with some more information for you! It does sound like they think it is sort-able with a second LLETZ. I think the result sounds like they didn’t get clear margins on the first LLETZ.

I’ve got my LLETZ next Friday. My smear was cin3, colposcopy/biopsy also about a week later and biopsy showed cin3.

Good luck with the LLETZ - hope it all goes well for you (I’m sure it will :crossed_fingers:t2:)!

Just an update that I had my second LLETZ yesterday under general.

Interestingly, the doctor (havent seen him before) wrote on my form “LLETZ for stage 1a1” which would obviously be amazing, but I haven’t been formally told anything, and they seem hesitant to pre results.

Does anyone have any experience in this or is it just a standard term that LLETZ is tried for early changes as a starting point and then potentially upgraded?

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