This is my first post so I'm hoping it's in the right section. In November 2011 I had my first smear which came back as abnormal and positive for HPV. Since then I've had various colposcopy's, smears, check ups etc and I've also had 2 LLETZ treatments which had to be performed under general anesthetic. The latter of these was a month and a half ago. The only geedback I received was that the surgeon said it was a "difficult procedure" and I was given various antibiotics etc. (4 types in all) which I wasn't given after my first procedure. I've finally received my results letter and all it says is that I need to go to the hospital to "discuss future management care". Basically I'm wondering if anyone has had anything similar and what exactly it is I'm supposed to be discussing. I'm assuming that it wasn't successful, or they would have said so in the letter - so is this the removal conversation or am I getting ahead of myself? My appointment is on Thursday but it's driving me mad thinking over all the possibilities - I wish they'd just put what it was actually about on the letter.
i received a similar letter last week, just saying an appointment had been made at the gyno-oncology unit and I was to attend and welcome to take a friend or family member (my post is actually 3 below yours titledo 'vague appointment letter).
I had lletz and a biopsy 5 weeks ago and been going out if my mind with worry since it arrived. My appointment is tomorrow.
It's horrible isn't it? I understand that there's probably option A, B C but you might also want to know about the possibility of D and E, but you'd hope they could put SOMETHING in there to kind of indicate what is happening one way or another.
I've done all of this on my own so far, but my husband's taken tomorrow off from work so at least I'll have some sort of support with me. My appointment is at 9:20 so at least it's over and done with first thing and I'm not worrying all day! Have you got someone to take with you? x
Yes it really is awful. You can't help thinking if it was all clear it would just get it out the way in the letter and tell you so. When I feel up to it I might consider raising the issue of these worrying letters. There should be a standard for things like this so that vague letters aren't sent out and send us women into mad panics.
I also had to have the lletz under GA so it makes it even more of a big deal doesnt it, recovery etc. I am trying to stay positive (very hard when i'm a realist verging on pessimist!) and hoping that at worst it's that the biopsy showed that they need to do the lletz again but when you have a gut feeling it's hard to think about anything else.
My appointment is at 11.15. My mum is coming with me as I don't have a partner and I have taken the day off work. Fingers crossed for us both. Out of interest where in the UK are you? I saw that someone mentioned different trusts have different ways of informing people i.e. if it's bad news they will always inform you by telephone etc xx
I've had the LLETZ done twice now, and after the first time he said the results didn't match up with what they would have expected, so I was then being talked about in a medical conference. I don't know if that was supposed to help me in some way, but all it's made me think is "oh my god, they don't know what's wrong". I've also been asked the do you have children, do you want any more etc. which I thought was just procedure, but then other people on here seems to imply that that isn't a good question to be asked and means the outcome isn't likely to be good.
I'm near Blackpool. To be honest, the level of information I've been given has been terrible. I know I had the high risk HPV strain, but only because I saw it whilst looking over a doctor's shoulder at my notes. I also have no idea what level of cells I've had removed, just that it's been the two different types - and that's something I've had to try and work out myself online. The letter I received was the generic colposcopy letter with the section about cancelling if you're on your period scribbled out, and the thing about discussing future management care just handwritten next to it.
I'm preparing for those sorts of questions tomorrow. I'm sure it's standard procedure. I'm 30 and I have no children, but I had a termination 4 months ago, can you imagine how much I am worrying I might regret that now - I can't even put it into words, it makes me feel sick to think about it, but thats a whole other story and there were a lot of other contributing factors to that decision....
I went to the docs yesterday for something unrelated and saw on the screen in the bottom right hand corner where it says things are due/over due 'cancer care review due' I felt sick and had to look away. I didnt mention it and pretended I hadn't seen it.
I need to ask about HPV, no one has told me if I am positive or not. Your letter is different to mine then. Mine literally stated the appointment time, that it was at the gyno-oncology ward and to take someone along. Nothing about results or discussing future management or being on your period. It sounds like they might be planning a colposcopy tomorrow for you?
Either way I hope we both get some reasonably ok news tomorrow xx
I know it's not a colposcopy because the bit about being on your period was crossed out, so it doesn't matter if I am or not. I also can't have smears or colposcopy's done without being under general anesthetic because of the position my cervix is in.
I can see how that decision would be haunting you now. All you can do is do one thing at a time and try and focus on your health at the moment. What a horrible thing to read on the screen! I did the same with the HPV - I just ignored it and pretended I hadn't seen it. Silly really, when you're in a place where someone might actually be able to shed some light on the matter for you.
If you want someone who may or may not be in the same position, feel free to send me a private message.
