So I finally got a phone call on Friday from the colposcopy department after leaving several angry messages on their machine. The secretary read out my results over the phone (why didn't she just do that a fortnight ago?!). Apparently my results came back CIN 1!!!!!!!! I was livid as you can imagine especially since her tone of voice suggested I should be grateful.
Anyhoo, I went in person to the hospital yesterday and made them print out the letter and my pathology report (which also said CIN 1) and in the report the lab have written 'Biopsy does not appear to be complete'. When I challenged my consultant on this point she said that the CIN 3 may have been removed by the punch biopsies alone - so why bother having a LLETZ? It doesn't make sense to me that both my smear and biopsy said CIN 3 but this is now magically only CIN 1 on LLETZ sample! I feel like I've had all this worry and treatment for nothing.
So she is sending my file to a multidisciplinary meeting in a few weeks but I would stake my life on it that they'll send me a letter back saying 'we feel you received the right treatment' and 'we're sorry you feel this way'.
Basically I told her where she could stick her 6 month check-up and I cancelled the appointment as I left the clinic yesterday (and as an amusing side note, they managed to send me a letter in the post this morning - less than 24hours later- confirming it was cancelled).
I had a similar result from my lletz except the biopsy said cin 111 and the lletz found no abnormality, I was told the same that the punch biopsy probably got it all. I had my 6 month check in september which showed i was positive for hpv and hsil, my punch biopsies showed cin 111 again and i'm having another lletz next week. I don't know if something was missed or it came back. My advice is to go for your 6 month check up just in case something was missed or it comes back and you may be tested for hpv then too, depending where you are, that will be useful to know.
It really worries me when I hear these stories, are we being told the truth? I was told that a lletz was all I would need to remove the CIN3 cells and low and behold after the lletz I was told I had cervical cancer. I was referred to another hospital for surgery.
All I can say is that we have to take control and attend these check ups, what if they have missed something? In 6 months it's probably treatable but is that going to be the case if you wait a year, two, three?
What happened to you Angry frog is inexcusable and wrong. Boy do things need to change big time, the system needs changed and the people working within it need re-trained or sacked.
Thankyou sunny day, I'm sure you are right but any further treatment I have will certainly happen elsewhere as I no longer have confidence in my consultant. I'm based in north London and my hospital is a well known central London one (I know we can't name names on here).
mfireework, I totally agree! I feel like they have been dishonest now but in a way I'm comforted that you agree with me (although sorry you are going through this) you start to doubt yourself..... I was left feeling like I'm being unreasonable for questioning my 'final diagnosis' as my Dr put it. They are playing God with our lives and we just have to accept it?!
mi wish you both luck and I hope that this is the end of things for me - frankly I won't be trusting any more Drs they really bring to mind the saying 'a little knowledge is a dangerous thing' !
I'd be quite interested in where your hospital is! I had my colp done in central London and I wasnt very impressed with their attitude. I've just phoned up to see when I might expect my results and I was told it could take 8 weeks which just seems mad! That's just for the biopsy results, and I am guessing its the same wait for the Lletz results after, at this rate I wont be finished by Christmas!!
I'm sorry you had a rubbish time :(
It is not uncommon for an area of abnormality to be removed by biopsy. Although it is not an approved treatment I have heard of several instances on here where a colposcopist has taken a few biopsies then said something along the lines of 'I think I could actually remove it all with the biopsy if I do one more'
It may well be that the area of CIN3 was quite small, and was removed in the biopsy so this showed CIN3 but when they went back and took more only CIN1 was left in the surrounding areas
It is a shame the way they have handled it. They are being dismissive because it is good news - CIN1 is better than you expected, and nothing to worry too much about (easier said than done I know). It isn't right, they should be more sympathetic, but try to just be glad :) And do go for your 6 month check up even if it is elsewhere x