Newbie here and totally freaking out! Received my results today - high grade diskaryosis. Aside from the usual fears I just had a few questions I was hoping people might be able to help with?
For anyone who also had a diagnosis of HPV, did your letter also refer to this? I had two letters and a whole load of leaflets, one letter stating the high grade diskaryosis finding, one hospital appointment letter (with an appointment for one weeks time!), two leaflets about colposcopy (one of which states “if your smear result has indicated that you have high risk HPV please read the enclosed leaflet”) and a what your results mean leaflet. No where on my letters does it mention HPV, does that mean I don’t have it? The nurse who did my smear said they would be testing for it so I’m definitely in an area that carries out routine HPV testing.
Finally, my letter states “it is unlikely that you have cancer” and goes on to say you will usually be treated as an outpatient and no need for hospital stay etc.
So my other questions apart from the HPV one above are: (1) does every letter state its unlikely you have cancer? Would it say something different if they really suspected it was there? Can I take any comfort from this at all? (2) should I be worried that I got an appointment so quickly? and (3) did anyone get told they had cancer at their colposcopy appointment or do you have to wait the four weeks for biopsy results?
So sorry for the length of this post and the 20 questions but any help and guidance would be really appreciated. I feel like I could cope a lot better if I had more information. Everything sent from the hospital is so vague and not reassuring in the slightest!
In answer to your first question regarding HPV - my letter did mention that they had found high risk HPV and although my smear only showed borderline changes, I also received all the leaflets and a colposcopy appt in my results letter for an apt which was 6 weeks away at the time. It is apparently normal practice to refer straight away for a colposcopy if HPV is found.
My letter also said it was unlikely that I had cancer, I have not reached a stage yet where I have been told anything to the contrary so I can't say whether everyone is told that. I would not worry that your appt is so quick, it may well be the first available appt they have, I had to wait 6 weeks for mine which was just awful! I can not answer your last question as that didn't happen to me, although the colposcopist did confirm that she thought borderline changes and said that she had taken biopsy's just because I had HPV.
Try not to worry too much (easier said than done) - I am the worst one for that as I am currently waiting for results. I also felt that my letters were very vague but I guess they just say what they need to really - hence why I have joined this group and have tried to educate myself on here through other people's experiences. All we can do is try to keep calm and attend all appointments.
Thanks so much for taking the time to reply Lollie. Like you said, not worrying is easier said than done. Trying but not really had a chance to process all of this if you know what I mean.
I think I read somewhere that they routinely check for the presence of HPV for borderline and mild changes, but may not for severe/CIN3 since it's a given that it'll need treatment anyway. My letter did say high risk HPV, but as with Lollie's mine was borderline from the smear results.
I believe all the letters say "it's unlikely that you have cancer" and that's because it is statistically unlikely. Anything serious would be visible to the naked eye during the smear, and there are some stories from ladies on the forum whose GP/nurse has done a smear and said they thought there was a problem there and then. It is possible that they could find microscopic cancer cells in either the biopsy or the piece they remove during LLETZ, but it's not that likely. As Lollie said, I know it's hard, but don't work yourself up over the really slim chance that you will fall into this category!
As for the quick appointment, mine was just as fast and that was for borderline changes, not even severe ones, so I don't think there's anything sinister to be taken from that. They do work pretty fast generally in getting us treated, from what I have seen.
Deep breath, hun, at least your appointment is soon and you don't have weeks to wait. Biopsy results often take around 4 weeks to come back, so I would advise asking the consultant who does your colposcopy what it looks like - they look at cervixes all day long so can take an educated guess. Chances are he or she will say "yup, looks like severe dyskariosis" and at least your mind will be somewhat put at rest.
Depending on the practises of your local clinic, they might treat you on the day, in which case you'll get it all over with in one hit. This seems to vary from place to place though, some do and some will call you back for a second appointment.
And lastly don't feel bad about having a load of questions. when I got the letter you've just received, it put me into a flat spin .... total panic in fact until I found this site and some lovely ladies who explained to me what was going on!
Thanks so much Moggsy. I had a major meltdown about it this morning but your post has really helped so thank you. My head knows that stressing about this is not going to change the end result and will make me feel worse but actually listening to my head is harder to acheive!
Hi I had my letter on Tuesday saying the same, from what I can gather its only those below "high" that get the HPV result written down. How are you feeling now...I'm still really worried about mine. I have my appointment come through today, for Monday...so atleast this next bit of not knowing will be out of the way soon!!
Hi Lolly, so sorry you're going through this too. I have been alright most of the day and thought I was past the worst (i.e. initial meltdown then sort of calm acceptance) but I had a mini melt down on the way home (the joys of a three hour commute - lots of time to sit and brood!) and now I'm back to square one. I hope you're feeling a bit less worried. If we don't chat online before then, please let me know how you get on on Monday x
Particularly for any newbies receiving their results and feeling scared, here is my time line:
Somehow managed to go 11 years between smears. One week after smear, letter arrived saying high grade dyskariosis, plus appointment for colposcopy for a weeks time. Colposcopy a week later, consultant said looked like CIN2, needed to treat there and then, results would be in a couple of weeks, had a chunk of my cervix removed on the day. Couldn't even feel the anaesthetic, no cramping, no pain afterwards, no bleeding, just a watery yellow discharge (I was half expecting blood and gore so this was a pleasant surprise). Consultant said it is fine to have baths just don't go swimming. 8 days after colposcopy (yesterday) missed a call from the consultant, called back but told he had left for the day but had dictated a letter (aaaaand enter panic mode again...). His very kind secretary called me this morning to read my letter to me so I didn't have to wait for the post saying pleased to confirm nothing more sinister found and please go to your GP in six months for repeat smear.
Take home points from my story? The speed you receive your appointments means nothing, honestly nothing. It depends on your hospital, consultant and lab workloads and policies. There are lots of ladies with positive outcomes so try not to worry and fear the worst (easier said than done I know and the complete oposite of what I did which was panic, panic, panic, cry, panic) and as others will tell you: STAY AWAY FROM GOOGLE! Lol
