I had a lletz on the 18th June afterv previous biopsy showed cgin (never had an abnormal smear)
lletz results were basically high grade cgin / present in margin ... I had to ring to be told this ... nurse I spoke to suggested that the diathermy might have cleared it anyway and suggested they might wait 6 months and retest or redo lletz . She told me I would be discussed at next MDT meeting.
mdt meeting was yesterday and after I called the nurse told me that they had asked for my cytology to be looked at deeper as there was a lot of high grade cgin and it was in margins.
when I said I was anxious to know what they would do she said that she thought they’d recommend a hysterectomy .. she said she would ring me back once the cytology had been looked at deeper and I’d got a full diagnosis.
now why did no one look at my results in more detail before the MDT / I was leadvto believe it was no big issue
Is it normal to be offered a hysterectomy after only one lletz (I was told he’d left a decent siz d hole at the time)
im now slightly concerned that they are more worried about me and CC than they are letting on
acan anyone shed any light
it appears my sample was retested for malignancy yesterday but they are happy that there is no invasive malignancy but now waiting for an appt to discuss treatment options... possibly still hysterectomy
I'm sorry you're going through this. I honestly wouldn't put too much stock in the nurse's opinion on the phone. I'm sure easier said than done but it seems like it's not really her place to comment on stuff like that?
I live in Canada, so maybe it's different, but I also didn't have clear margins. The doctor also thought that the diathermy may have cleared it anyway. In any case, he recommended to do a follow up colposcopy 4 months after the LEEP. I did that in March and it came back "completely normal". I'm set to do another colposcopy at the end of this month or in September. I'm so nervous that they'll find something.... :/ That being said, he offered a second LEEP or a cone biopsy procedure before looking into a hysterectomy given that I want to keep my fertility.
What I've learned through all of this though is that you need to be your own advocate and really push for second opinions and review all options. It feels like some are quick to jump to a hysterectomy rather than looking at more conservative treatments that are just as effective.
Keep me posted on how all of this turns out and what they tell you. Sending you positive vibes.
They might offer you a second lletz to clear the CGIN.
Try not to worry,wait and see what the MDT recommend. Hysterectomy might be offered but there may be other options xx
Thanks ... it helps just writing it all down.
nurse today said my next appt would be to have a conversation and go over my results but that the MDT meeting suggested hysterectomy being a viable option!
It’s seems unusual to not have a second lletz but I’m 40 and have 2 kids and no plans for any more.
im expect my next contact will be a letter with my appointment on the 24th (she did say she would see if I could be fitted in before!)
Nicki was yours cin or cgin if you don’t mind me asking ?
It was AIS (i.e CGIN). I just called to make an appointment for my second follow up colposcopy but they're all booked until October 1!!!
And maybe they are suggesting hysterectomy if you don't want to have more children. My doctor definitely said that could be an option down the road, to avoid having to closely monitor this thing...
I'm in the same boat
CIN3 LLETZ 5TH MARCH
unclear margins but waited 6 weeks and the burn worked. Smear clear. Follow up smear 15th July, Cin3 back, still HPV +
Cone biopsy 2nd Aug. Dr now off, told by receptionist hysterectomy might be necessary so im assuming unclear margins...goung to stand in Dr Monday to get actual pathology results. I think I'm going to be told unclear, do I want to want another 6 weeks, repeat, blah blah or just do hysterectomy.
It's horrible. I feel dirty and broken:(
And I tough choice, but I will probably just get it over and done with!
Go with your gut and never be afraid of asking questions...i am also using Hystersisters website...
The thing is I’ve only had one lletz ... second one dosnt appear to be being offered !
I’ve had lletz in Jan following a diagnosis of CIN3. Had my 6 month smear and the results came back as ‘results the same but still abnormal cells’. I’m assuming that means that HPV is still there and they didn’t ‘get’ all the cells.
Is this similar to what happened with you? What needs to happen to get to a hysterectomy recommendation?
I’m in a slightly different boat as I’ve never had an abnormal smear (last one 2 years ago all fine). I’ve had bleeding on and off for 8 years (yes I’ve visited gp numerous times!)
i have CGIN which is apparently often more difficult to detect and treat