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.

@Bex4567 - as already said to you, yes it can go from CIN1 to CIN3, or normal to CIN3 in 6 months. The chances of it going from CIN1 to cancer in six months, though, are ludicrously small. You need to understand that CIN is NOT cancer and for most people NEVER WILL BE, even if they never get any treatment. For all a vast number of people know, they’ve had multiple occasions where they have had CIN1, 2 or 3 which has already gone back to normal all by itself before their next smear came round. After all, if the tests had been timed differently, I could have had 10 years of normal smears, but because they were checking every 6 months to a year, they were finding abnormalities on a regular basis.

But what if they missed abit last time on my colloscopy and letz that was cin 2 or 3 and now it's progressed to cin 3 or cancer...thats my concern...my concern is something has been missed 😭and if I have gone from cin 1 to cin 3 in 6 months then within a year surely it would progress worse

I do think at this point you are worrying and clinging onto the worst case scenario in the face of absolutely all the evidence pointing to it being fine. Your cell changes are not cancer!! They’re not just going to miss cancer on the biopsy or for CIN1 to just magically develop into cancer in an incredibly short time frame. I know it’s worrying but you can’t spend all the time until your appointment thinking the worst.

Your extreme concern about something being missed is pointless, as it’s only 6 months since they last looked, which was only a few weeks from the time before when they looked, which was presumably only 3 years from the time before that, so it’s not like a gap of 6 years with no testing. My experience is a perfect demonstration of why looking frequently is not always good for your health, as most changes progress for a while then go back to normal all by themselves and this could happen multiple times over the space of many years if you have active hpv infection, or it could progress and then stabilise for years before progressing again. The biggest issue with screening programmes is that they result in over treatment for most people - ie many people will have been treated for something that was never going to kill them in the first place. It is still worth it for the number of lives saved by the screening programmes, as most people would rather not wait and see and only act when they have actually got symptomatic cancer.

If you always get your smears and colposcopies done when they are suggested, you will be very unlucky to still get cancer. You are more likely to be treated unnecessarily and to be made to feel anxious about something that was never going to kill you. You are viewing this as a one-way, swift and inevitable progression to cancer and it isn’t, it can wax and wane for years and the norm is for it to take many years to go from abnormal, non-cancerous cells to cancer, even if it only takes a few months to go from normal cells to a high grade, non-cancerous abnormality. Now they know you have an active hpv infection at the moment that needs keeping an eye on, that is what they are doing for you. There is absolutely no point endlessly questioning the meaning of your smear test when everything is already in hand to answer the question for you imminently, anyway.

I totally understand what your saying and I get im probably exasperating but u have to understand the fear expecting clear or if anything low grade results...to having worse than before I even had the lletz...😭it worse smear now than before my colposcopy which came up as moderate changes... so u have to see my concern of why this has happened...im gojng to be in bits wed I no it when I go on and hope I just get some reassurance from them 😭

My concern is they only biopsy a section which they removed ...if they've missed a patch then it could be cin 3 or worse. That's my concern as to go from cin 1 biopsy to cin 3 surely is very unlikely

@Bex4567 It is possible for CIN1 to turn into CIN3 in a fairly short time. It takes like 10+ years for CIN3 to turn into cancer. It doesn’t work like that where they’ve biopsied the wrong place - obviously biopsies are not infallible but you’re worrying that you currently have cancer and that you’re going to die within the year which is literally just essentially impossible with the information you’ve been given.

I hope it works out ok for you - it will, you may need another LLETZ which isn’t nice. But you are not going to be told you have cancer.

I understand your saying that but how do you explain my recent smear then...6 months ago biopsy cin 1 ...6 months later high grade servere so I assume cin 3 or worse 😭mine must have progressed from 1 to 3 in 6 months

Oh my gosh I could have written this. Exactly the same boat as you (8 month old - and bad back which I put down to pregnancy also). I had my lletz 3 weeks ago and now waiting for the results of that. Very scary time! Here's a virtual hand hold x

CIN1 can’t turn into cancer in 6 months!

I think at this point you are determined to convince yourself it’s cancer. I will be very pleased for you when you are told it’s going to be ok 💐

I’ll say it again, you have not had a diagnosis of CIN3.
I hope you get some reassurance on Wednesday.

Hi what do you mean sorry x

Then why is my smear high grade servere 😭so cin 3 ? 6 months ago cin1 now this

CIN2 is also classed as high grade x

@Bex4567 - at colposcopy, they have a magnified and lit up view of your cervix and can see the whole outer surface of it, magnified, in one go. They stain the abnormal cells so that it’s obvious where they are located. The normal cells do not pick up the stain. How likely do you think it really is that someone has totally missed an abnormality at your colposcopy six months ago? On the other hand, for a smear, someone shoves a little brush inside your vagina and sweeps some cells off your cervix without being able to see what they are doing, and the person interpreting the cells taken doesn’t know how well the smear was taken, making it far harder to interpret than a biopsy - it doesn’t need to be accurate, after all, it just needs to give a general impression, unlike a biopsy, which needs to be accurate.

Now - which result, using your intelligence, not your knee-jerk panic response, do you think you should be trusting more? The colposcopy and biopsy, which told you that there was no chance you had cancer, or even CIN3, six months ago, and that the abnormal cells present at the time had been removed, or the smear? Now listen to people telling you it can go from normal to CIN3 in six months, but it would be astonishing if it went from normal to cancer in that time frame. Anything can happen, including human error, but you need to focus on what is most likely. It’s not as if, I hope, you spend your time worrying you might fall down the stairs and break your neck tomorrow, or die in a horrible car accident, even though these things might happen if you are extremely unlucky.

I’m having a scan on my lymph nodes at some point because one of them is swollen and they have to check it could be cancer - I’m not worried about it because a) the doctor said it was probably fine and b) that would be wasting my time because there’s f all I can do about it anyway! I also do struggle with some health anxiety but I find it’s more the unknown for me, like if I notice a symptom I might immediately panic it’s cancer for 5 minutes, but then if I’m actually having something investigated (like this, or like my colposcopy) I find it easier.
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Gently, I would suggest maybe looking into some CBT if you haven’t had any. Keep us updated and wishing you all the very best of luck! X

I had CIN3 with mosaics patterning. I had a lletz procedure under general anesthetic. My smears have been normal since. I have had two children that I carried to full term since. Try not to panic. The colposcopy and lletz really aren't that painful. I had mild period like pain after both. The pain after the lletz lasted about a week but was manageable with paracetamol. Try and stay positive.

No thats high grade moderate

I totally understand what your saying and I probably am thinking of the worst case scenario but when I spoke to my gp she even said they my have missed a bit 🤦‍♀️.....I didnt no they view thw whole cervix as good as that...its just concerning that something must be there to pick it up again...they wouldn't put servere on a smear for example it was normal do you see what I'm saying...so even if its cin 2 not cin 3 it has changed in 6 months...and if they did miss a small bit that was cin 2 or 3 then it's now progressed to 3 or cNcer....

Thankypu for your reply..ive already had a lletz which came back biopsy cin 1 ....this is my 6 month check which came back high grade servere again 😭so confused

Yes, of course they may have missed a bit, if it was barely there in the first place. No system is perfect and nothing in life is 100% guaranteed. To think they may have missed something that was going to have the capacity to become cancer within the space of six months is another thought process altogether, though. Progression from CIN1 to CIN3 really isn’t the serious thing you think it is. CIN3 is not cancer. They time treatments and follow ups carefully so that they can deal with issues before cancer has had a chance to develop. They are taking this seriously for you so that you don’t have to worry quite so much. Yes, the worst could happen, but the whole system is designed to prevent the worst ever happening and it’s so successful at doing that that the taxpayer is willing to fund it.

I'm hoping my appointment goes OK wed I'm going to be jn tears that there going to see cancer when they look 😭they will probably think im stupid 😭

. Let us know how it goes. I’m sure they’ll be very reassuring.

😭I hope so I had a nice lady last time who reassured me but 😭always think if I get a vague person who dosnt say much it will male me worse 😭I can only hope its not cancer 😭