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.

Hi Op, please try and not panic, I was in the same situation as you a year ago when I received similar results following my smear. Cervical cancer takes years and years to develop. These results don't mean you have cancer it just means that you have some cells that need checking out. Remember smear tests are there to help prevent cancer.

Severe dyskariosis is treated in exactly the same way as mild or moderate dyskariosis. It is not cancer and the abnormal cells are often removed at the initial colposcopy appointment under local anaesthetic (via, eg, LLETZ), then the patient goes home immediately after. The removed tissue is then checked to see if it was severe dyskariosis and if the entire abnormal area was successfully removed. You then have a subsequent colposcopy to see how it has all healed and check everything looks OK, more regular smears/hpv tests for a few years, then back to the usual smear test cycle (assuming it is confirmed the abnormal cells were not cancerous and are now all gone). Obviously it is alarming to be told you have an abnormality caused by the virus that causes cervical cancer, but cancer itself has not been detected in your smear and chances are it won’t be at colposcopy either, and that the only treatment you need will be the removal of those cells, which is certainly not a pleasant experience, but is usually a simple, quick procedure, unless the abnormal cells are in a tricky to reach bit of the cervix.

Sorry - I should have said not treated like mild dyskariosis, as they usually wait with that to see if it goes back to normal by itself. Severe abnormalities are less likely to go back to normal without treatment, so you are quite likely to have those cells removed as described above, to make sure they don’t become cancerous.

Ps most people, after treatment, never have a problem with abnormal cells again.

Thank you for your replies. Typically it looks like my period is about to start so I'll have to ring to see if they will still do it. if not be a few more weeks of worry.

I'm trying to take my mind off things, but that just involves spending money

Can I ask how you got on after .I'm battling the same thing

Soooo many women have had this and been absolutely fine. You really, really, really do not need to spend a moment worrying.

The colposcopy is fine. I was told it looked like I had this at colposcopy but then the biopsy came back as just hpv with no cell changes - might not be accurate so I’m back in 6 months!

If the biopsy on your colposcopy confirms high grade changes you’ll have the LLETZ procedure. Not pleasant, I imagine, but honestly it’s a preventative thing and you will sooooo likely not need any further treatment. You don’t have cancer and you nearly 100% aren’t going to be found to have cancer at colposcopy. High grade changes can eventually (5-10 years!) turn into cancer if not treated. You will be having treatment and so it’s not going to turn into cancer.

I can’t stress enough that this is fine and you will be completely fine.

Hi thankyou for the reply..the reason I am scared it because my smear this year came back as high grade moderate changes ....I went for a colposcopy 6 months ago had a lletz treatment and biopsy which came back as cin1 clear margins...now 6 months on my test of cure smear has come back high grade servere which is worse than before the lletz so I'm convinced it's cancer 😭I csnt eat,sleep or anything..my colposcopy is next wed due to me ringing up for a cancellation 😭I've come to the conclusion that this was my last Xmas with my kids...to have cin 1 six months ago and now cin3 surely is not right ..

@Bex4567 - you don’t know for certain yet what the actual status of the cell changes is, so don’t panic. My repeat smear 6 months after LLETZ treatment came back with an alarming result indicating possible further high grade abnormalities. However, after having removed another sizeable chunk of my cervix at the follow up colposcopy, the conclusion from cytology was that it was not CIN at all this time, but another type of (benign) abnormality and inflammation caused by my body’s reaction to the initial treatment, and that was over 15 years ago. I haven’t had an abnormal smear test result since then.

I had cin3 at a smear about 9 years ago. It did turn out to be cancer but it was treated and I’m absolutely fine. So even worst case, most people are ok nowadays and as pp have said, it’s much more likely that it’s nothing to worry about anyway.

The waiting is awful, I agree but you will probably be absolutely fine and if on the tiny, tiny chance it’s not, then you’ll be fine after treatment. Please try not to worry.

What do you mean possible further grade changes...coz mine came back cin3 when my original smear was cin 2 so not so severe 😭this is my concern...
Though biopsy at lletz was cin1 so this is why I'm confused how my lletz only 6 months ago was cin 1 and now cin3 😭

Sorry to hear this...not a thread I wanted to read to be honest 😭 but glad your ok now....thats wht I'm worried about although I had a lletz only 6 months ago biopsy cin 1 so this is why I'm confused its come back cin 3 😭

My first CIN3 result was only a year after a normal result - I’d been cycling between normal and CIN1 for 10 years before that. So yes, changes within the cells of the cervix can happen quite quickly, whether going from normal to abnormal, or going back to normal again from abnormal, but it is far less likely to go from a normal cervix with no cell abnormalities to actual invasive cancer in just six months, so the fact you had a colposcopy six months ago where they visualised your cervix under magnification and removed all abnormal cells that showed up following application of acetic acid and iodene, or whatever they use to make the abnormalities visible, makes it highly unlikely you actually have invasive cancer. So, whilst it is impossible not to worry, there is no point at all assuming the worst.

I understand what you saying but I had a smear in April-high grade moderate
June-colposxopy 5biopsy and lletz -cin1
Follow up smear 6 month check -high grade servere 😭

@Bex4567 - as I said, they have not found invasive cancer, then, so no reason to assume the worst, but yes it is possible to go from normal cells to CIN3 in 6 months. CIN3 is not cancer. It is unlikely they will find cancer. There is no point whatsoever thinking this is your last Christmas. If the abnormality keeps returning, even after a second treatment, this doesn’t mean you will ever get cervical cancer. This dd happen to someone I know and, ultimately, they said they couldn’t do any more LLETZ procedures on her, as there was not enough cervix left (I think she’d actually had 4 procedures over the years) , so she had a hysterectomy including complete removal of the cervix, and has not had any abnormalities since then (you still have to get regular checks), which was 8 years ago. She’d finished having babies years before, so found it a relief in the end. You could view yourself as lucky in a way - they found a problem before it became cancer that you can now be reassured will be kept an eye on, rather than having an issue you are unaware of and no smear due for several years.

I understand what your saying but I'm scared it's already cancer....and worried why the lletz didn't work and only showed cin 1 😭....im really struggling I just want it all gone and it's going to be an agonising wait till next wed 😭don't no how I'm going to get through it

It only showed CIN1 because that’s all it was. They leave it six months because that’s long enough to show whether it’s cleared the active hpv infection or not, and short enough that it won’t have had time to become an incurable problem. Even if your six month check had been clear, they would be calling you back again at the very least annually for the next 10 years to keep an eye on it.

I just dont understand they must of seen cin 3 changes to put my smear as that 😭so I'm worried the biopsy had missed something I don't no how accurate they are ....my gp has said if it was advanced cancer they def would of seen it on my last pap 😭.. and why didn't they get it all when they said they got clear margins 😭unless they missed some complety its all so worry ..I literally feel this is it and I have to say bye to my kids 😭

I have a close family member who is pretty much an expert on this - she is a doctor, works in obs and gynae and has presented research papers on this topic at conferences.

Please trust me - I have had many chats with her when I was having all my smear stuff and she was so unbothered by it, not worried at all. It was a factor in me not worrying about it either.

It won’t be cancer. You need to listen to and trust the professionals - presumably you aren’t a medical professional so with all due respect, if your GP says it’s not advanced cancer you need to accept that! Cervical cancer is slow growing.

You’re experiencing totally catastrophic thinking which is understandable but it really doesn’t sound like you have anything to worry about.

U hear horror stories of women that have had cin 3 and then biopsy had confirmed cancer 😭so I no it can happen.. after ny letz 6 months ago I just didn't expect it to come back so bad my biopsy only being cin1 😭.
I asked my gp if I had advanced cancer would they have seen it at my last colposcopy and she said yes def...
The reason I asked her that was coz last few days I've had pain in my buttock and down ny leg and I no leg pain is a symptom of advanced cervical cancer...I havnt had it for months tho its just come back now...
I no maybe I shouldn't get into a state but I have 2 kids and I want to be here for them ,they need me .
Thankyou for taking rhe time to respond to me it really does me so much....
5 more days and I'll guess I'll no my fate I'll.no doubt have to have another lletz being as tho im showing cin 3 so preparing my self for that...just worried she's going to look and see cancer there and then

@Bex4567 - it’s the biopsy that is accurate, not the smear test, and the colposcopy enables magnified visualisation of your entire cervix, whereas a smear test is more hit and miss on what cells get picked up, so you have to place more confidence in the result of the colposcopy and biopsy than in the results of the smears.

The stories you hear of women who turn out to have cancer are stories of women who have had a routine smear test several years after the last routine test and then find out they have cancer at the resulting colposcopy, not of women who have already had a colposcopy and biopsy that did not show any evidence of cancer six months ago. The chances of a colposcopy and biopsy having missed invasive cancer are far tinier than the chances of a routine smear picking up cell changes that turn out to be cancer already. You are catastrophising by discounting the fact your last biopsy showed the cell changes were in fact less severe at that time than the smear test had indicated (which is commonly the case) and unnecessarily concluding that this time the more accurate result will be even worse than the smear test result.

This.

You are so stressed that you are concentrating on every twinge and magnifying them. I know, I’ve been there.

I appreciate u messaging me I really do ...and I wasn't sure how accurate the biopsy is ...its just a massive shock when it was cin 1 with clear margins and I expected a clear 6 month check ...
And then it comes back worse than my original smear before the letz 😭....
I just feel there must be some abnormality there for my smear to pic it up....is the biopsy dome by machine do you no or a person

By a person (using a microscope!). With a biopsy, they know there is already a problem, so they look very carefully and individually at it. With a smear, there will be multiple samples and most will be normal, so it’s easier to make mistakes and miss something, or get something wrong (like the severity, or even the specific type of abnormality), because a more random sample of cells have been taken which may not be sufficient for an accurate picture anyway. It’s like the difference between playing Where’s Wally and, having found Wally, assessing exactly how big he is and what he looks like close up 😆. HPV testing has helped, because it has reduced the number of smear tests that have to be analysed in the first place, but the fact is, a smear is just indicative of a potential problem and a biopsy diagnoses the problem, its severity and extent.

I know it is impossible not to worry, but i had this nearly 20 years ago and was successfully treated and all my smears since have been.clear. My daughter might claim she thinks I am 175 years old but I am still very much alive.
I remember going out of my mind with worry at the time though