Hi all
I was diagnosed with adenosquamous stage 1b1 at the end of May - I am scheduled for a radical hysterectomy at the beginning of August.
Firstly - do most people get a letter with their smear test results through the post? I never got any result through the mail, just a call from one of the local GPs saying I'd been called up for a colposcopy. So I've no idea what the result of the smear actually came back as - should I have been given this information? Also I've noticed that people have mentioned the grading of their cancer as well as the stage - I've not been told this either. Is this information you are usually provided with, or do they only give out the details if you specifically ask?
Secondly, from what I've read, cervical cancer is usually slow to develop, which is why most people have it picked up at the CIN level, before it progresses. If this is the case, is it only because I have a more unusual type of cancer that it won;t have shown up any earlier? - this concerns me, especially as back in 2009 I had an operation for perineal repair and removal of granulated scar tissue following the birth of my first baby. They told me at the time the scar tissue would go for testing to make sure 'nothing untoward' was going on. I was never sent any results, so presumed this had come back all clear. They told me at the time they had had to remove more scar tissue than they were expecting, so surely something should have shown up? Sorry to be TMI - but the tear I suffered was quite high up (induced, ventouse delivery with no pain killers 
- so I completely felt the tear and where they were stitching up!), so I think will have involved some cervical tissue. Is it correct that they review your old smears when you are diagnosed - if so do you think it is worth me asking about the tissue they removed during my op?
thanks and best wishes, xx
Hi Gardeng,
I cant help with much else, but wanted to say that I have not been told the stage of my cancer and I havent asked to be honest in my case I believe ignorance is bliss, they have told me its curative. I believe you have to ask what stage it is but this could vary with different consultants and how much info they divulge.
I never had any smears before I found out I had cancer so hopefully someone else will be able to fill in the blanks there for you.
Best wishes,
Laura x
Hi there - sorry to hear about your diagnosis…
I can try to answer a couple of your questions…
I got results of my smear back via a letter… And they said abnormalities and that I’d be sent to colposcopy clinic. I think I recieved this 2 weeks after my smear.
I haven’t had my cancer staged or graded… To be honest I’m not interested in knowing so I haven’t asked, I was just told early stages and it’s curable! That’s all I cared about!
I’m not sure about the rest of your questions as I haven’t experienced any of it!! … I had my first smear and completely bypassed CIN etc and landed straight at CC. So everyone is different I guess.
Although it can’t harm to ask about the tissue that was previously removed?? This is your body! You have the right to know!!
Take care! Em xxxx
Hi there,
sorry to find you on here also...
i was diagnosed adenosquamous stage 1b1 also, but towards the end of june, i too will be have the "full works" rad hysterectomy at the beginning of August.
i never got any results from my smear by letter but a phone call saying that i needed to go for a colopscopy, however i'm pretty good at reading upside down and i saw that it stated severe dyskaryosis.
As to whether it would have been picked up earlier i asked the same question of my consultant. he said that this type of cancer developed in the canal of the cervix so it is harder to detect with a smear test so it was "lucky" that it was spotted.
pat
Hi
Thanks for your replies - I think I'm going to put a list of questions together for my nurse and send them over to her. I was going to wait until I saw the consultant, but that's another 3 weeks or so when I go in for my op and I'd like to feel like I was doing something in the meantime.
It's been great that the weather has been lovely - we've had quite a few family days out in the sunshine - as obviously come August I won't be upto walking round theme parks all day and playing with the kids.
I'm glad in one way I've had quite a long wait as it's given me time to get my head round things and on some days even forget about the whole thing, but in another way it would be nice for it to be all over and done with.
EmJess - hope your surgery all went ok and your results are good.
Patlini - sounds like we'll be going in around the same time for our ops, have you had chance to get your head round it all yet? I've heard it's usually worse emotionally after the operation, but I'm hoping that as I've been waiting so long I've had time to process most of my feelings - my worst fear is that a few months after my surgery they'll come up with a new less radical treatment, which would just be my luck!
Best Wishes
xx
Hi Gardeng,
When I was processing my diagnosis (and deciding between some treatment options), I asked for a meeting with my nurse and she sat with me for over an hour, going through all of the stages of my diagnosis, looking at my records and answering my questions.
I would defintiely recommend doing that rather than sending her a list, if it is possible. I've had two different consultants and while they were both very pleasant in their way, they just didn't have the time to spend helping me get my head around things and working out the questions I really needed to ask the consultant.
Best of luck with it all, x
