First smear at 25 - severe/high grade dyskaryosis

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kirsty2013
First smear at 25 - severe/high grade dyskaryosis

Hi all,

I wanted to share my experience in the hope of reassuring others that are going through the same. 

I was called for my first smear test just after my 25th birthday, and went for it straight away. The nurse explained something to me about abnormal results, but it went in one ear and out the other. Of course my results would be fine, I'm 25 years old! So, that was that. Didn't give it a second thought. 

About a week later, on a Saturday morning, I picked up the post from the doormat and opened an NHS letter. "The results of your smear test have shown high grade dyskaryosis. It is unlikely you have cancer but..."

Well, I broke down. I couldn't believe what I was reading. My partner was very supportive but I was convinced I had cancer and I was a gonner. I tried to pull myself together but that weekend was a rollercoaster of sobbing then putting on a brave face, then sobbing again. I phoned for a colposcopy appointment first thing on Monday morning but was told the soonest they could get me in was in 2 weeks. I was gutted - I expected to be in within a few days. I asked them for cancellations, even tried to go private (which would have cost almost £1000!), but in the end had to resign myself to waiting. And there's no doubt, the waiting is the worst part. The first few days were hell. I managed to resist googling for a few days but eventually I gave in. The first thing I came to was a case study on Jo's Trust about a 25 year old girl, the same as me, who had cervical cancer. Yes, they removed it, no further treatment needed, and now she's absolutely fine, but at the time I just found myself in a blind panic.The more I googled, the more worried I became. I made an appointment with a nurse at my doctor's surgery hoping for some reassurance. They confirmed that I had severe dyskaryosis (which was news to me, as the letter only said 'high grade'), but she did help to reassure me somewhat. I would recommend a visit to your GP or nurse if you are really worrying. If nothing else, they may be able to phone the clinic and get you in a bit sooner if you are struggling to wait. The couple of days right before the colposcopy were the worst, I think because I was preparing myself for bad news. I wasn't too worried about the actual procedure, just the news that would come after. In fact, the night before the colposcopy I almost bought a book from Amazon on how to cure cancer through nutrition...!

The day of the colposcopy came and off we went to the hospital. The consultant was lovely; he really put me at ease. He said "ok, you do know it's not cancer that's been found on your smear?". I said "I know it could be cancer". He looked at me like I was a bit loopy and said "Ok, maybe a 1% chance". Well, from what I had read online, I thought it was more like 20%, based on the fact that severe dysksaryosis is apparently so rare, so that was good to hear! They left me to remove my pants and climb onto this very undignified chair with stirrups... ok, it's not nice. But of course I was covered with a sheet and do you know what, they see this every day, several times. They use a speculum, much like the smear, and apply some kind of iodine solution to show up the abnormal cells. It didnt hurt at all. He said "there's nothing here that looks like cancer". I was so relieved to hear those words. He injected the local anaesthetic, which I must admit, did sting a bit. But it certainly wasn't unbearable. He then did a LLETZ or Loop Excision which I didn't really feel. The whole thing only took about 5 or 10 minutes, then off I went! 

That was 10 days ago. I have had some discharge and slight bleeding, but no pain. Maybe some very very mild period pains on the evening after the procedure. I got a letter a few days ago asking me to go back for a follow up smear in 6 months. I'm still waiting for the letter to confirm what they removed, but I'm not concerned about that, since he said it didnt look like cancer, and whatever it was, he removed it. The nurse told me that generally they would be able to see cancer on the smear, and you would be called back QUICKLY to investigate further. But even if this happens, it's still no guarantee it's cancer. Plus, in cases of cervical cancer that are found in the early stages, around 90% are completely cured. Most cases of cervical cancer are found in people that have NEVER been for a smear, or haven't been for a long time. 

This has turned into a long-winded post, so sorry about that, but I hope this reassures someone. I was so worried because it was my first smear; who knows how long my cells have been abnormal for? Would it have already turned into cancer? I think it's normal to think like this, but the fact is, it's still rare in people aged 25 and under. The internet would have you believe that high grade dyskaryosis is very uncommon, but you only have to ask around to realise this is not the case. Plenty of people have been through this, and the vast vast majority of the time, it's easy peasy to get rid of. 

Best wishes :o) 

Perri25

Thank you for your post , I'm 25 and had my smear as soon as my birthday had passed my results also came bk high grade so immediately I thought I've got cancer going to leave mY babies without a Mummy :(  I'm glad to read your post as everything on google scared me to death ! Got mycolposcopy in 1 week so fingers crossed :). Xx

had 1st smear in may 

Results high grade dyskaryosis 

  in 2 weeks have my colposcopy 

Colposcopy showed HPV and biopsy showed CIN1 

Go back in 6 months

kirsty2013

I'm sorry you're having to go through this but try to think about this logically. The chances of it being cervical cancer are incredible small. Most cases of abnormalities are caused by the HPV infection (that's also what caused mine). Apparently it takes on average 6 years from initial infection of HPV to turn into severe dyskaryosis. Two thirds of cases of severe dyskaryosis would never turn into cancer, even if they were never treated. And for those that do, it takes on average at least 10 years to turn into cancer. So that's 16 years in total. And since you're 25... well, you do the maths! That's what I learnt from all my googling Laughing

I hope that reassures you a bit. Another thing to think about is that when you google, you generally only read about the bad cases. Most people, once they get the all clear, just put it behind them and move on. They don't come back onto forums such as this one to tell their uneventful story of how they're ok! That's really why I decided to post this thread, and hopefully more people will do the same. I know that when I did read the odd story of somebody in the same situation as me who turned out to be fine, it did make me feel better (at least for a while!). 

So try not to get too overwhelmed by it all. The odds are all massively in your favour, you have done the right thing by going for your smear as soon as it was offered, so I am positive you will have the same treatment as me and you can put it all behind you. x

flissy

Thank you for your post. I had my smear test last week, and had a letter within days saying I had severe dyskaryosis, and I've been panicking ever since - especially when the hospital then called to move my appointment forward.

My smear last year came up with just 'borderline abnormalaties' so to now have this, which I think is a big jump?? Anyway I've managed to scare myself to the point of sleepless nights, wondering what to tell my family if its bad news - I know this is over the top (& I'm usually level headed) - I don't think it helped that I googled it virtually straightaway either. I had to go for a colposcopy last year, which was fine, but this time, I've worked myself into such a state about it.

 

I guess what I am trying to say is thank you for your post.

fiona89

Morning!

I had my results back from my smear yesterday and they came back with high grade severe dyskaryosis and also that the HPV virus was present. The last 24 hours have been a blur and i've been an absolute wreck but reading this thread has calmed me down! It's comforting to know how common this actually is.

I'm still a tad terrified as im only 24 (25 in 6 months) so its scary to think thats its already in the 'severe' category. I've been told I will receive a letter from the hospital in the next 2 weeks with an appointment but to know it could be 4-6 weeks for the appointment to take place is not a nice thought, especially with Christmas just around the corner.

Its reassuring to see all the positive outcomes and the current success rates for this. There is no history of this in my family so I know it is unlikely it will be anything so sinister but even still I can't help but be completely petrified.

Thank you for all your posts ladies, its made me slighlty less apprehensive!

Fiona 

  • 20/11/2013 - First smear test - age 24 and 6 months
  • 28/11/2013 - Results - High Grade Dyskaryosis
  • 09/12/2013 - Colposcopy and Biopsies
  • 10/02/2014 - Lletz under GA, results 05/03/2014 - letter stated op 'should' have been adequate, colposcopy in 6 months :)
  • 17/09/2014 - Check up Colposcopy, no abnormal cells showing when solution added. Just had Smear Test
  • 22/10/2014 - Results back from smear - inconclusive
  • 22/12/2014 - Smear Test at Colposcopy Clinic - 2 months after inconclusive results
dhodson2k13

Thank you so much for this post....still worrying which is think is normal. would be more worried if i wasnt worrying. I dont think the way this news is being delivered to patients is very comforting. I had my smear on the 27th recieved my letter today and went ahead straight away too book my appointment (23rd december). How ever when opening my letter I was given immediate doom and gloom and no wonder I worked myself into such a state with the formality of the letter. I like the rest of you seem to only be on our first smears at 25 ( 25 in april 2014) this letter was a shock and to be honest short explantion that can only seem to lead to the patient thinking the worst. 'it is unlikely you have cancer' In these circumstances I think they be given by a gp or nurse so theres oppurtunity to ask question and be more comforted I shouldnt have to google or search forums for comfort on the other hand Im very glad i have found this forum it has put me slightly at ease but :( wish I could have answers now. thank you so much ladies for sharing your circumstances. xxx

LinziLou88
LinziLou88's picture

I completely agree hun, you get the big C word thrown around with no real explantion. I felt the exact same way as you, a gp appointment should be offered, even though it says in the letter' please don't hesitate to call us' you dont really feel like you should! At my colp all that was basically said to me ' this is very common' 'please don't google' Well if youre not going to explain in detail then of course i am going to seek answers elsehwere! I'm quite lucky in the sense that most of my close female relatives have had the lletz treatment and of course they are fine now. But that doesn't make me feel like i'm going to be the same, or that i feel i can just vent my feelings and worries at them.

Anyway i am glad i googled, i found this site by google. This site is a Godsend. I have gone from sleepless nights, worrying, crying to quite looking forward to my treatment (still nervous obv!) but looking forward to having it removed, and been in the care of doctors and nurses who are going to do there best to make sure i'm ok.

 

I got my appointment through for lletz on NEW YEARS EVE!!! why!? Lol. what a horrible apppintment date! I am going to try and change it as i fly for a holiday on the 3rd!

On a last note, we should all be glad and thankful we went  for our first smears! I think it is such a daunting thing for us to do. At least were getting sorted. I've already been telling all my friends 'make sure you go for your smear!!' lol

xxxxxxxxxxx

 

 

First smear Oct 13 mild changes HPV postitive Colposcopy Nov No treatment 2 biopsies Nov CIN2 diagnosed, awaiting appointment!
Tilly22

I am so grateful for this website and this forum. Yesterday I received the dreaded letter following my first smear test and was told I have high grade dyskaryosis too. It's comforting to know that it isn't so uncommon after all and I wish you all luck with any upcoming tests. Thanks to all!

Cinders

I have just recieved the results of my smear it's come back as high grade dyskaryosis oh boy what a shock (previous smears were clear),all I want is my appointment to go to have the coloposcopy but letter says will recieve the appointment within 2 weeks then how long will I have to wait for the procedure to be done,I want it done now!! I called my drs surgery to speak to the person that did my smear I was told they will call me back but didn't! Having read the others comments that people have written on this forum it has helped a little.Don't know though if it would be quicker though to go private as I feel I can't wait...

tracyjoanne

Just got my letter today saying i have high grade dyskaryosis,  and since been non stop of phone calls to GP surgery and helplines, plus on internet ! I couldnt even say the word never mind knew what it was ! ..... im 48, never had any problems before and this letter (on xmas eve of all days !!) it has just ripped me apart. GP says 2-3 weeks for appointment but that feels like forever ! in such a mess right now thinking the worst, my 14 yr old son is here and so excited about xmas and im walking round like a zombie and desperately trying to hide my tears from him,  your forum notes have been really helpful and reassuring, thank you

 

Gemma1986

I too got my letter on Christmas Eve (of all days!!) advising of high grade dyskoryosis. It's completely ruined my Christmas and each time I look at my young daughter, I want to burst in tears. I had an mild abnormality 3 years ago (wasn't sent for any treatment) and have since had a smear test every 6 months, which have all been clear. So now to have 'high grade' has really freaked me out. I'm so worried and cannot stop thinking the worst. Hoping that I can phone to the hospital tomorrow to push for an early appointment, as I don't think I can manage a two week wait! This site has helped me relax slightly, but I'm still sick with worry. Hoping it doesn't come to much like everyone else in this thread.

Nikki2752

Hi all! I've never posted on any forums before however I felt this page so helpful and reassuring when I too went through this recently.

 I had my first smear (I'm 25) and thought nothing of it. My results came back just over a week later saying that I had abnormal cells called high grade keryatasis. Obviously I panicked and thought the worst. I cried, I could think of nothing else over the next week whilst waiting for my colposcopy appointment. I was distracted at work and at home with thoughts of what they might tell me at my hospital appointment. The day finally arrived and my boyfriend who was very supportive came with me to my appointment. The staff were lovely and very reassuring. 

They talked me through the procedure and showed me the abnormal cells on the screen. I had treatment there and then which was loop diathermy (LLETZ) and they send it off for biopsy. I had to wait 4 weeks for my results which came through today which informed me it was CIN3 which means all of the cells they removed were abnormal in that area but are not cancerous. It's such a big relief to finally get the result I wanted and to be able to put it behind me. I need another smear in 6 months but no other hospital appointments. I hope that if you are going through the same thing you can be reassured by some of these stories on the forum, I know it helped me! 

nme14

Okay now I'm scared. While it's very comforting to know I'm not the only 25 year old that has 'high grade' dyskaryiosis I'm quite worried that I received the letter only a week after having the smear. I received the letter on Friday telling me this and my local hospital rang me at 8.55 this morning (Monday) to arrange an appointment for this week. Part of me is happy that I'm receiving the care so quickly but part of me is scared it means something more serious is going on and they already know it :(