So I had my cervical screen 2 weeks ago and on Saturday had my letter to say I was HPV+ and had high grade (moderate) dyskaryosis.
Went for my colposcopy yesterday and had LLETZ. I asked the nurse and consultant if they thought it looked worse than moderate changes and she said no but it also wasn't less which is why we proceed with LLETZ.
I just have a bad feeling though that it is worse and wondered if anybody had ever been upgraded from CIN2 at cervical screen to CIN3 or worse when colposcopy results came back?
Hi! I haven't gone from moderate to high, although I had somewhat similar situation in my colposcopy on Monday. I had a low grade smear result but when I went through the examination, all the colposcopist could tell me was that she actually found an area that was more severe than the smear suggested. She just took biopsies and told me she would be in touch soon. Obviouly this has me worried now! From talking with various people, I think the smears are usaully fairly accurate, but that it is still quite common for it to be shown to be a bit more severe at colposcopy. I think if you were moderate anyways, they would have wanted to treat you regardless. I guess the waiting game is just very difficult but try not to let your mind run away with you! If it was CIN3, you still had the right treatment done. Trust that they will get back to you soon and that you will be able to handle things regardless of what the result is. Try to find some peace in the fact that the colposcopist said that she didn't see anything worse - therefore it would be very unlikely that they wouldn't have gotten everything they neeed to get with the LLETZ. Wishing you all the best.x
Thanks for your reply! Bless you, your mind must be going 100mph then though I am sure it would be very unlikely for you to go from low grade to a CC diagnosis, if anything you might just have high grade changes and need LLETZ so try not to worry yourself too! The LLETZ itself is fine and wasn't much more uncomfortable than a smear or colposcopy itself. And like you say I guess at least it has been treated, just hoping they got it all out. The team seemed pretty honest when they said it didn't look worse and sounds like most people get told during the exam if it does look worse so I'm hoping they were being honest and weren't just sparing my feelings! All the best to you too! Let me know when you get your results x
Sorry to hear that you are going through this and that it's making you feel really worried.
I was one of the unlucky (although I see myself as lucky) ones who did go from CIN 1 at a biopsy to Stage 1a1 cancer at LLETZ. I was sent for colposcopy before my smear test results arrived back as my nurse who was doing my test didn't like what she saw as my cervix looked irregular. So I went in for colposcopy number 1, the doctor had a look, said she wasn't concerned took a biopsy which came back as CIN 1 as she predicted. On the same day I also received my smear results which were CIN 3 so there was a discrepancy so I had to go in for LLETZ. So the nurse colposcopist again said she wasn't worried. 10 days later my LLETZ result found a very very small area of stage 1a1 cancer what they often refer to as micro invasive carcinoma, it was where my CIN had just started to turn into cancer, my tumour was 0.1mm by 0.15mm. I had to have a second LLETZ as I had unclear margins and that came back as CIN 2 and 3 with no cancer. They left over some CIN but I was told that the cautery still the end often kills any residual cells and also my immune system will be getting to work to heal the wound from the procedure and may pick up and distroy any HPV or abnormal cells.
Whilst my story probably sounds quite worrying I also wanted to say it's not the norm, I went from normal to cancer in 4 years but it was very very early, and why I say I am lucky is that the LLETZ caught it as that's the purpose of the treatment to catch early cancers and also you might have different rates of cells changes so like for me for example I had a bit of CIN 1,2,3 and cancer and the affected area was small but cell changes happen at different rates. Also if it was anything beyond micro invasive cancer, the doctors are likely to have seen this and I was told it would bleed. Cervical Cancers of a more advance stage tend to have symptoms. So if it's worse case scenario which I highly doubt it will be, then like me, LLETZ might be enough I catch it. As I say, my circumstances are not the norm but exactly the reason why we have the screening programmes in the first places fo pick up these early cancers as my situation could have been so so different had I left it any longer (I put mine off for 10 months).
I know it's difficult and terrifying and worrying, I've felt all those feelings ten fold, try to remind yourself that you've also had it removed and, if they saw anything worrying then they would have been able to give an indication at the very least at your appointment and if they haven't and it turns out to be cancer likelihood is that it's been caught early. It's very rare for people to have cervical cancer as mostly the screenings pick up on this before it becomes more serious. I hope that helps, I know it's not going to stop you worrying and the wait is the worse! I've just had to wait two weeks following my follow up colposcopy 6 months later after my initial cancer diagnosis and I was losing my mind. All was fine it was just a bit of scar tissue but your mind likes to go to the worse place before it goes to the best case scenarios. I found what helped me is just doing the things I can control like eating well, a bit of excercise and sleeping well just to make sure my body was in the best position possible to deal with whatever comes next physically and mentally. Also it will help you heal from LLETZ.
How awful and terrifying having such mixed results to begin with but I guess, like you say, it was good then to get the CC diagnosis rather than it being missed like it could have potentially been.
You were quick to get LLETZ results back in 10 days?! I wish I could hear sooner than 4 weeks but I guess if I hear sooner there's probably something more sinister so no news really is good news in this situation!
It does sound like most of the time if there's something serious going on the nurses tend to spot it and let you know during colposcopy so just trying to bear that in mind.
Glad you are doing OK now though!
Exercise is a big thing for me but I obviously can't post-LLETZ at the minute though at my appt they said I could probably be back to exercise in a few days?! What was your experience post-LLETZ?
I think it's not something you can really predict as hospitals have their own waiting times in different areas. I don't think it matters whether they come back in 10 days or 4 weeks as it's all dependent on how busy the hospital is and they have to prepare the sample, let it set, then be dissected and if there's people before you you'd be in the queue essentially. I was told 2-3 weeks for results this time round and they were back in 9 days and it was good news.
I found my first LLETZ easy, I healed really quickly and had minimal pain. Second LLETZ was hideous, from start to finish. The doctor didn't check the anesthetic worked and shouted at me when my leg was shaking due to the anesthetic and the recovery was grim. It took the full 6 weeks to be back to normal. The pain only lasted one week. I had 6 weeks in between the two LLETZ so I was probably not full healed from LLETZ number 1.
How awful to have to go for a 2nd one and have it be awful like that! I had initial bleeding and cramping, done nothing today so little cramping and bleeding but expecting that may chang as even a short walk earlier triggered worse symptoms. Desperate to get back to my training though!
