High grade pre cancerous cells, I'm petrified. Please talk to me

[Midnightsbecomemyafternoons]

I've just had a call regarding my most recent smear, I have to go to have a biopsy etc next Thursday. High grade dyskaryosis.

I'm shaking. I have three small children, one is disabled and one just a baby.

Please, can you offer me some words of reassurance from personal experience or even anecdotally.

I have terrible health anxiety and this is my worst nightmare. I can't stop crying.

Posting here shamelessly for traffic.

Hi OP, this happened to me just a few months ago. I am 25 and it was my first smear. I had the procedure to burn the cells off and now all is fine x

Holding your hand from afar. I had this when my son was 11 months old - widespread CIN III dyskaryosis. He's now 15 and I'm still here and absolutely fine in that department. I had to have a fairly extensive loop excision and was on six-monthly smears for a while, and then annual, but they've all been clear ever since and I'm back on three-yearly now.

The first thing the nurse at the colposcopy suite said to me when I walked in terrified was 'You're in the system now, so we will sort it out. It's the people who don't go for their smears who have real problems'. When the consultant did my colposcopy, he said 'That isn't cancer. That would take ten years to turn into cancer'. I know it's terrifying, but they've found it and they will deal with it, and when I had my treatment the staff were all lovely and so, so gentle and supportive.

PM me if you want to. Happy to talk if you want any more details

I had CIN 3 many years ago, I believe this corresponds to the current terminology of high grade dyskariosis. I had loop diathermy removal at the colposcopy clinic and annual smears for 10 years. I've never had another problem.

It was a long time ago and there may be more recent research but I remember the Sister (she was amazing) at the colposcopy clinic telling me that 15% of women with CIN 2 (treatment at the time was observation) would go on to develop cancer whilst the remaining 85% would resolve on their own. Whilst CIN 3 indicates more significant changes it does not mean you will go on to develop cancer. Remember the cells are PRE cancerous. We have great screening and early effective treatment.

Cancer survival depends on early diagnosis and treatment, you have been picked up before the cells have become cancerous, you will be treated quickly and closely monitored.

Gosh what a reassuring thread this has turned out to be, thank you all so much for sharing your experience. It really is helping me.

I was in a state of shock when I came off the phone and had to excuse myself to the bedroom where I just burst into tears. I have my DC and DSC here and can't have them see me panicking as it'll scare them.

I'm so glad that so many of you had no further issues after your smears and to the lady who did have stage 1 cervical cancer, I'm so glad it was treatable and that you have recovered ❤️

I had grade 2 and had lletz.
No problems since.
At some point I was pregnant so had to delay - can't remember whether that was for the actual treatment, or for a follow up colpiscopy.

I'm flitting between being upset and angry. DH who knows absolutely nothing about HPV and the associated risk of pre cancerous + cancerous cells is adamant that I wouldn't have caught HPV from him having an affair, even though I absolutely did not have it 3 years ago.

It clearly is where it has come from isn't it? You don't just develop HPV out of nowhere?

I'm trying not to go down that route of blame etc as it's not helpful now but it's quite the kick in the teeth when you think back to how it could have happened.

This happened to my friend too when she was in her twenties. She's nearly 70 now and has been fine and clear ever since. But I do understand your anxiety and fear regarding your children. Remember to breathe and centre yourself.

I had exactly the same 2 years ago. Cells were removed a month later in a super simple procedure and I've never had a reoccurance on smears since. Don't panic, you caught it and it's being dealt with.
Sending lots of positive vibes your way.

From what I was told at the time, HPV can lie dormant for many years before flaring up. I would try not to focus on when you caught it - you could have had it before you met your DH or you may have caught it from him. Easier said than done - but just focus on getting through this and getting your treatment.

Hopefully you'll find this reassuring, I was in a total panic when I had my results but honestly it has been nowhere near as scary as I expected.

I had CIN3 and CGIN (which is changes to the cells inside the cervix) diagnosed in 2020, I was seen really quickly at the hospital and had a cone biopsy same day - which I wasn't expecting as the leaflet they had sent me said it would need to be done under general anesthetic, but it was done with local. I was uncomfortable but not in pain and was given gas and air to relax. The appointment less than 20 minutes in total and the results came back in less than a week.

The healing was a bit strange, not painful but itchy! And because the tool they use burns away the affected areas you will get little black bits in your discharge. I did find my periods to be a bit more painful for the first couple of months while I was healing, and you can't have sex or go swimming or take a bath for a few weeks.

Unfortunately, they didn't get clean margins on my biopsy but had already removed quite a large section of my cervix. I was offered a hysterectomy at that point, but I declined as I was only in my 20's and had been trying for a baby. I could also have chosen to have a repeat cone biopsy, but it would have meant removing about 90% of my cervix and meant I wouldn't be able to carry a pregnancy. I now have a smear every 6 months at the hospital where they are monitoring me for any changes but so far everything has been fine - this will go on for 10 years, unless they detect any further changes before then. If I hadn't wanted children or had already completed my family, they would have strongly recommended hysterectomy.

I'm due my 6th checkup soon and honestly, it's fine, I see the same doctor every time, they do the smear, she tells me how nice my cervix looks and I get the results back within 2 weeks.

Please try not to worry, I know we all convince ourselves of the worst-case scenario but it's incredibly unlikely you'll have gone from a clean smear to cervical cancer in 3 years. Most likely is you'll have your treatment and get the all clear, but even if you're like me and don't get the all clear there are options and really robust treatment and monitoring available, it's nothing to be afraid of.

Good luck with everything x

I had CIN3 three times in my early to mid 20's - had three lots of treatment and regular smears until 30 - i'm 38 now, and no re-occurrence and all clear smears ever since. Don't worry - the reason smears are every three years and because cervical cancer is very slow to develop (so I was told at the time) - you are highly likely to be absolutely fine.

I had moderate. Had a LLETZ in 2012 no issues since

I had the same in 2021. They did the biopsy and took out all the cells . Been fine since . I had HPV too you don’t always catch it it’s in all of us and can develop. The wording of the letters is scary but in most cases it’s just a preventative measure. Sure all ok

As pp said, I believe hpv can be dormant for years so it really isn't a certainty that it was due to your partners affair (obviously still could be but you'll never know for sure regardless).

I had high grade in 2018 when I was 29. Had a leep procedure to remove the cells and clear smears since then. I've also had a baby since and am pregnant again currently. The only ongoing issue I've had is scar tissue on my cervix from the leep. Not a major issue but affected my last labour and I believe it can affect your fertility if it's particularly bad (I don't think this is common though).

Good luck, I'm sure it'll be absolutely fine op. The reason we have these smears is to catch it early so it can be treated BEFORE it develops into cervical cancer.

I had severe dyskaryosis picked up on a routine smear at age 28 - was quickly referred for colposcopy, where they took a punch biopsy, and then was offered LLETZ treatment (CIN3).

It is anxiety-provoking for anyone, but the chances of this being fine and treatable without further complications are very much in your favour. Personally, I found the colposcopy quite uncomfortable, but the LLETZ itself was fine - they give you local anaesthetic and it was over very quickly.
I had my 3-year follow up smear test recently and it was clear. Best of luck OP

HPV can be dormant for years, decades even, and 80% of people will have it at some point or other. While it's possible you caught it from your DH and his affair partner, either one of you could have caught it years ago and it's only recently become a problem.

I had this 30 years ago. I'm still here. I used to have smears every year after that which was reassuring, but with nothing nasty emerging, my tests are now back to the normal cycle.

I had CIN 3 with an area of cancer in situ at 24, and was treated with LETZ and other things (I don't remember what!)

I'm 43 now with two children and have had yearly smears since then, all have been clear.

Please don't panic, it is easily treatable and the likelihood of return to that grade is low.

I had a loop excision a couple of years back and now have annual smears. It was scary but all clear since.

It doesn't work like that. You might have already had HPV at your first smear, but they didn't test for HPV first then.

You can carry HPV for years, as can your partner, without it showing up.

The rate at which cells change in your cervix is so gradual that an HPV infection in 2019 almost certainly wouldn't result in high grade changes just 3 years later.

What your partner did was unforgivable, however please don't get it in your head that he is to blame for infecting you, as it could just as well be a virus you caught 10-15 years ago which has laid dormant.

OP try not to worry. I've had a grade 3, had treatment then yearly checks up for a decade and all is fine. I'm back to 3 yearly check ups and 15+ years there have been no further problems.

Also I'm not the only one to have similar treatment in my close friendship group.

Thanks for the clarification wrt HPV and that it can lay dormant undetected. I wasn't aware of that. I assumed that if I had it in 2019 it would've been detected during my first smear.

Its definitely not helpful for me to go down the blame route so I'm going to put that out of mind, I just connected the dots and thought wow that's clearly where it came from.

I can't believe how common these high grade results seem to be, so many of us.

I was due this smear in September but delayed it until the end of October for no reason at all other than the fact I wasn't concerned or thinking about it. I'm so glad I went.

Smear tests don't regularly test for HPV, they just look for cells that look dodgy. One known risk factor for cervical cancer is getting exposed to HPV in younger years, so whilst i am not excusing your DPs affair, it may not be the cause of you contracting HPV.

I know it is scary to hear you have a positive test, but this is why we go for smears. To catch the dodgy cells early so they can be removed relatively easily. You delaying the test a month is vvvv unlikely to make any difference to your outcome, so dont fret about that.

Chances are you will need a small procedure, and more regular smears from then on, but life will likely return to normal pretty quickly.

Good luck! And ladies GO FOR YOUR SMEAR TESTS

I had same and had the surgery, took an inch from my cervix and two months later had ivf and carried twins who just turned 16.

I had high grade CIN 1,2 & 3 + HPV.

Had the LLETZ procedure to remove them and awaited biopsy result.

Was the most stressful 4 weeks of my life waiting for the results - but results were NO cancer cells, and the procedure had removed all the abnormal cells. So just got to go back in 6mths for check up.