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.

Thank you all so much ❤️

We're so fortunate to have these preventative tests available. I'm going to make sure my DD knows the importance of having them when she's older.

When I had the smear test the nurse didn't mention seeing anything of concern, nor did I have any bleeding afterwards, so thats a good sign right?

I haven't DTD in a few months now due to an unrelated health issue but the last time we did I don't recall any abnormal bleeding then either.

I did have an unusual episode of upper stomach pain accompanying my (then-due) period pains some 6 weeks or so ago, my GP put it down to gastritis though which I do have as a result of prolonged NSAID use.

From what I can tell the odds are definitely in my favour for it all to be fine so I'm going to try my best to concentrate on that and not fret about the what ifs.

I had these. Exactly the same. Went in for a same day removal, painless just a little uncomfortable. Had more regular smears for a couple of year all been fine for 15+ years. They’re pre cancerous that the key word. I was told it’s actually really common. X

Hi @Midnightsbecomemyafternoons another CIN3 here, cone biopsy, had twins later, & another singleton, all good!
Cone biopsy was in 1988 & am here to tell the tale. :-)

Do push for more regular smear tests afterwards though, I was promised them, never happened.

When I was pregnant with my second, my immune system was shot, so the hpv virus that was obviously dormant in my system, flared up and caused cell changes. I thought my then husband had been playing away too but it was only afterwards I was told that it can lie dormant for years!

5 years ago this was me. I got a call from the hospital on the Friday afternoon to go in on the Monday morning. My results came by post on the Saturday. So when I got the call I knew it was bad given I was still waiting on the letter. Had the biopsy, went back a week later where they removed a chunk of my cervix. Not going to lie it was not pleasant. The injection hurt more than the procedure. However she got clear margins. My next check was all clear and so have the following ones been. Just follow instructions and take it easy after. She struggled to stop me bleeding after removing the pre cancer cells. Had me upside down for 30 min in the chair. Wanted to keep me in after but on the promise of not doing anything for the following week I went home.

I have! I went for a colposcopy in July this year, they removed the cells there and then. It was uncomfortable but not painful. Some bleeding afterwards for a few weeks. Got the biopsy results back which were clear. I was told at the time that even with high grade cells, it's very slow forming so usually takes years to develop into cancer (if at all) so yes, I would say it's very unlikely, given your smear was clear in 2019; but great that they've picked it up now and are going to treat it.

Also - re. HPV; it can lie dormant for years and years; so might not have been your husbands affair? But obviously can't say for sure. It's not an STI, but can be transmitted that way.
Good luck!

I believe the first thing they actually look for with a smear test is HPV, if it's not showing they don't do anything else with your results; and actually only look for abnormal cells if you are showing as positive for HPV. Can anyone else confirm?

bless you, I'd be panicked as well but this is exactly why we have the smears, to get rid of problems before they become serious problems.

All the best for next week, hopefully you can have further reassurance on the spot, at least in terms of next steps (if needed).

I had CIN3 (high grade) in 2013. I had injections into the cervix and they were removed. They haven't re occurred since.

You'll be ok

I had CIN2 in 1995.

Went for colposcopy & was treated there & then with laser treatment.

The staff were wonderful.

I knew one of the nurses so she asked if I wanted her to leave.

I didn't so she stayed & held my hand!

The worst thing-the smell whilst the treatment was happening.

I would also say that if you are terrified-tell them.

As far as I know you're correct, this is what I was advised at my last smear test - that the process now is to check the sample for HPV and if it's negative, the cells are not checked any further. I believe this was different in the past.

You get the opportunity to watch what they're doing on a screen
I declined.
My insides are on the inside so I don't have to look at them 🙂

My friend had this. She got them removed - she’s fine and no issues or positive smear since

Do. Not. Panic. (Easlier said than done I know ). They've picked it up and will be keeping an eye on you.
I had this twice and two lots of LLETZ almost twenty years ago. Consider getting diazepam and / or a general anaesthetic for LLETZ and hysteroscopies I had a hysterectomy a few years after that when CIN returned and they couldn't cut any more out neatly. I'd had kids by then so me and my consultant didn't want to muck around and we got rid of my cervix for good.

I had moderate dys (I can't spell it) about 16yrs ago when I was early-mid 20s.

I had a colposcopy and the biopsy came back clear. I had regular smears (I think every 3 months) for a while. Then twice a year and then yearly. By the time the next smear came round it had self resolved.

It's hugely scary. The key thing is they've spotted it. This is why regular smears are so important and you've had yours. Massive hugs xx

No experience with your diagnosis OP but I do have plenty of experience with health anxiety unfortunately. I just wanted to send you big love and my best wishes. The right people have posted here with reassuring stories that have even managed to calm my own health anxiety a bit (and that’s not done easily). Please please don’t Google anymore. I say that gently. You really shouldn’t Google because your situation is unique to you and if anything all this tells me is the importance of attending any and every test offered to us. I have a good feeling about this. Take care and keep busy until you know more. Good luck!

I've just had a call from the lovely lady in the coloscopy department who called me this morning. They've had a cancellation and can fit me in one Monday to get it done and out of the way, she noted I was quite upset this morning and doesn't want to leave me in limbo for longer than necessary.

I asked a few questions that I wasn't able to this morning and she confirmed that it's just a biopsy I'm having, not the LLETZ just yet, the biopsy results will determine what if any treatment I need.

She said they have had cases in the past where women's smear results have shown high grade changes but then the biopsy shows only low grade changes, so they don't commit you to treatment until they know exactly what it is.

That would be a very welcome discovery!

Really try not to panic. It's very common. I had the same when I was about 27. I even had to wait nearly 2 years for the biopsy as I was living abroad at the time and couldn't afford to have it done privately there (was not eligible for NHS services at the time). I eventually had the colposcopy and biopsy when I got private insurance through work. It was definitely pre-cancerous, but they said not to worry and give it time. The body often sorts itself out. I think I had another abnormal smear or two after that. But I've not had one since. I'm early 40s now.

I was also given a reassuring figure (I'm a statistics person so this was good to hear) she said around 98% of people that go in with this are absolutely fine (fine in that they don't get a cancer diagnosis) 😊

Thank you all so much for talking to me today, sharing your first hand experiences and those of loved ones. Health anxiety is such a bloody drag. I spent years worrying that this might happen some day and now I wish I just gave my head a wobble and hadn't wasted so much time.

One positive.. this has given me a major kick up the backside to stop smoking right away. I've been reducing my cigs for a while but if I needed motivation then this is it.

Oooh, exact same for me. All sorted out by cryo-treatment inthe coloposcopy unit, and all smears clear since then (25+ years).

FYI your daughter won't have to worry about this particular problem. As the kids are all now being vaccinated against HPV, it won't be a contributor to cervical cancer when they grow up. Sometime in the next few years, probably, the age-bracket for having routine smear tests will be raised, accordingly. The younger women will mostly have been vaccinated against HPV in childhood, and will be very unlikely to have the cellular changes that smear tests find.

Just read your update OP - that's a huge positive, all right! It will cut your risk of LOTS of diseases, not just cancer, and it's also something that will benefit your daughter! And just think of the £ you will save...

Aww bless you, @Midnightsbecomemyafternoons What an angel, getting you in straight away! You'll be absolutely fine. Hugs x

Hand hold here for you OP, I've had an abnormal smear and I have a Colposcopy booked for two weeks time. Mine show low grade dykaryosis - I'm absolutely terrified of the procedure etc as everyone I've mentioned it to has told me horror stories about it. This thread has eased my mind a little too.

I've always had normal smears with no issues.

All the best OP. I know a lady who had precancerous cells and she had a short course of treatment before getting the all clear. Really shows how important it is to get our smears every 3 years. As you said, even in the worst case scenario it turns out to be cancer (chances are it won’t), it will be in an early stage where you can have treatment. Best wishes to you.