HPV and high grade (severe) dyskarosis

[Helpsmearresult]

Hello all

I've lurked on mumsnet for over a year now but not been brave enough to post. However I'm hoping someone can calm me down about a recent diagnosis.

As the title says I've had my smear test back with hpv and high-grade (severe) dyskarosis. And honestly it feels like I've been handed a death sentence.
I don't have my colposcopy till next week and I've been googling (probably very unwise) and all I can do is cry. I've also got a 4 month old to take care of and frankly I'm barely functioning.

I'm not scared of the colposcopy more the results.

I'm also beating myself up that 2 years ago I didn't push for further checks when I had bleeding after sex, the consultant said it was cervical erosion. But now my head is all in a spin.

I do have a husband but he's as worried as me, and now also things I put down as due to having a huge baby is bad back etc is actually cancer or something.

I'm sorry if this is so jumbled, my biggest fear is death and this is hitting me hard, despite what the letter says about almost all cases not cancer, it doesn't mean it won't be.

It was, I missed it in 2018 due to other things going on in my life.

😂Sorry, @Bex4567 , that made me laugh. Of course, you could also read from that that that even if they had missed an abnormality in 2015, it was still five whole years before it became (curable) cancer, and the poster had missed a smear test. Also, the HPV infection had likely happened over 17 years before the cancer diagnosis, before the first LLETZ, so it took a very long time to cause cancer if it was the sole cause (it may have been linked to the breast cancer).

There is still a very big difference between abnormal cells confined to the cervix and abnormal cells that have spread beyond the cervix into other tissue (cancer). Yes, whether a recurrence of an abnormality or a newly developed lesion, it’s not nice to find out the first treatment may not have successfully cleared the hpv infection, but it really isn’t phenomenally rare for the follow up smear to show that the first treatment did not clear the hpv and stop more abnormal cells developing. I think a recurrence of abnormalities happens to something like 23% of women after their first LLETZ treatment and this mostly happens in the first 6-18 months after being treated, so you are unlucky but not super-abnormally unlucky, and it is therefore not considered hugely alarming by the medical profession if you already have more abnormal cells after six months. Tbh, I think you are going to have to get used to this being a bit of a background concern for the rest of your life, because you will be recalled for more regular testing than most women for a great many years if you remain positive for high risk HPV, so will get regular reminders you might possibly have something to worry about!

What does the last bit mean ? I will possibly have something to worry about

It means it will be a reminder that smear tests are looking for abnormalities and that you’ve had abnormalities before, so might get them again - given your anxiety, I don’t see that as being something that you would not worry about, as more regular testing indicates you are seen as someone at higher than average risk of developing abnormal cervical cells, that’s all! In all honesty, despite the fact I have not had any abnormal smears in 15 years and am now in the standard 3-yearly testing programme and not being tested annually, so am no longer officially considered at higher risk than other women, I still get a bit anxious about my hpv and smear tests (more so than I would do if I hadn’t had 10 years of regular abnormal results and then two LLETZ treatments, and more recently another positive hpv test, even though it was negative again when repeated a year later and the smears came back normal, so I didn’t get sent for colposcopy). It’s unlikely all your anxiety will just disappear, especially when regular testing is telling you there is not nothing to be anxious about.

I do have something to be anxious about tho...I do understand what your saying tho...I appreciate them keeping an eye on me ....but this result has thrown me.to go from cin one clear margins 6 months ago to this results ...I dont no how they can miss cin 3 unless there is a complete different patch that's cin 3 or worse

You don’t know it is CIN3 though until a biopsy is taken and been dissected/ viewed in the lab.
All you have is the slide that has a random collection of cells on it that they have classed as needing further investigation.
Don’t borrow tomorrow’s worries.

My concern isn't having cin 3 it's having worse....and I assume high grade servere which I have ,means the cells are servere so could be cin 3 or worse...I dont think a smear can detect cancer

There are plenty of reports of high grade cell changes on the smear having nothing detected at a colposcopy.
I’m on a group on Facebook that is full of people with an abnormal smear thinking that they are going to get a death sentence, most people have a lletz and then on to surveillance smears.

@Bex4567 - but I had confirmed CIN3 at colposcopy then another severe abnormality report 6 months later. Turns out I didn’t have anything to worry about, just a bit of regret I’d had another big chunk removed from my cervix the 2nd time when I didn’t need the further treatment after all.

Whats the page if you don't mind me asking

I no but u didn't have clear margins I did 😭thats what's worrying me they said they got it all ..so if it was a different patch hiw did they miss it at colposclopy last time thats abit worrying

Yes I bloody well did have clear margins!!

LLETZ is not used just to biopsy, if they do LLETZ at the initial colposcopy it’s because they are treating it at the same time, so they make sure they remove a bigger area than the abnormality they can see.

But still missed some of mine 😭...sorry didn't realise u had clear margins

@Bex4567 - you don’t know that, though. They took everything they saw. They might find nothing at your colposcopy, because actually there isn’t anything else left needing treatment after all. They might find a new lesion that wasn’t there last time - as I’ve already explained, it is possible for this to have happened within 6 months and for most women not cured at first treatment, the abnormalities do recur (note recur, not get missed - they are new areas of abnormality) within 6-18 months. They might have missed something last time, eg, if it was absolutely tiny and not remotely cancerous at the time and in a trickier spot to visualise clearly. As you can see, that’s 3 possibilities and you are obsessing about the worst case scenario of the least likely one.

Happy new year OP.

You're right of course. There could be cancer. The whole point of these tests is to prevent that but lots of women still get cancer.

The difference is your perception and reaction. You are catastrophising a routine situation. If you have increased you citalopram then hopefully this will help calm you soon but if not you should go back to your GP. All this stress isn't good for you.

I dont see how there going to find nothing....my smear before my lletz was high grade moderate and not this one is servere there must be something there there picking up...otherwise these people need more training at what there looking for.....I no im obsessing and I'm sorry its just a very anxious time for me....and totally unexpected to have that result worse than when I went there before...3 more days to worry I guess....this is horrible

You don’t see it because you are not a doctor, you are a person suffering from severe anxiety! The only thing you know is that your line of thinking is not logical, helpful or healthy. You have already been given examples on this thread of people who had nothing serious wrong with them after all and it has already been explained to you why, however well trained someone is, they can’t diagnose anything from a smear, but they will be erring on the side of caution, so you are more likely to find it is less bad than thought than that it is worse. And a smear test can actually come back indicating possible cancer, and they haven’t done that, have they, they only think it’s possible CIN3.

But woukdnt u worry if you had cin 1 only.6 months ago with clear margins and then follow up smear high grade servere. Woudlnt u think what the hell have they missed or worry it was worse than it was ? This I'd the worst possible outcome 😭how u can have cin 1 clear margins thwn this

Yes, of course anyone would worry, just not to the extent that you are . Your mind is trying to tell you that you must be one of the extremely unlucky ones, whereas a doctor would tell you that your follow up result is not that unusual and there is no point in panicking. The worst could happen, but it probably won’t, and even if it does, the worst is not actually as bad as you think, anyway.

No I wouldn't worry about that specifically OP. I'd feel statuaries that the tests are available and preventative action is being taken.

Because you have some cells that are abnormal, but not cancerous. They've told you this with their grading.

You worry they've missed something. You have no rational to think that. It's almost impossible to miss cervical cancer because of the testing, provided women go for the tests.

But the risk of 'missing something' is the same with everything in life.

Go back to the GP about your anxiety.

What was your first colposcopy and lletz for high grade????what did the biopsy come back as ? And then u had clear margins...and then 6 month check high grade servere?

Severe dyskariosis. Biopsy came back confirming CIN3 with clear margins. Follow up smear at six months rather alarmingly suggested possible severe abnormalities of the glandular cells (CGIN), which is more worrying than what they have found for you, as glandular abnormalities are much more rare and harder to monitor, as the glandular cells are found mainly in the cervical canal (endocervix), not the ectocervix (the bit of the cervix that is easily visualised at the top of the vagina). The biopsy diagnosed the abnormality as metaplasia and inflammation, probably a reaction to the earlier LLETZ, not neoplasia (which is what the N stands for in CIN), and metaplasia is a common cell change in the transformation zone where smears are taken and is seldom of any concern when found there. In my case, everything settled down after this, as I said, and no abnormalities of any sort have been detected in my smear reports ever since. Prior to the severe dyskariosis, I had 10 years of smear tests every six months to a year, because the results kept swinging between mild dyskariosis (probable CIN1) and normal every few months. I knew I had high risk HPV, because they had just introduced the tests and made them available to people privately when I had the first abnormal result, so had paid to find out. These days, hpv testing is a normal part of the testing regime. The rapid change to CIN3 for me happened after two fairly close together pregnancies, which therefore probably dampened down my immune system enough for the changes to develop further than usual, rather than appearing and disappearing by themselves, as the longest gap I had ever had between smear tests at that point in my life was 1 year.

So they got all your cin 3 on the cervix then with clear margins.....and yours just said cgin...like they got all mine which was cin 1 😭with clear margins..but now come back high grade servere....what if they have missed cancer on my last lletz and it's progressed and is too late 😭.....somethings progressed for it to come back bad again I gave seen no reports of women having cin 1 biopsy to then having worse than there first original smear which was moderate...its craziness 😭

See mine came back moderate changes my first smear and then biopsy cin 1 ....so if its now cin 3 they must have missed a patch 😭surely and once they've cleared the cin 1 cleared margins surely it cant go back to cin 3 in 6 months 😭