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Original poster

HPV and high grade (severe) dyskarosis

157 replies

Helpsmearresult · 02/03/2021 09:00

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.

OP posts:
Bex4567 · 30/12/2022 21:21

Thankyou for your kind words...
I no it was more the shock of going from cin 1 six months ago to now this 😭wasn't expecting that at all as they got clear margins...worried they will look next wed and go yep things have got a lot worse it looks like cancer 😭....
I no you prob think I'm being silly and I no im extreme with my worry but I have 2 kids I want to see grow up 😭and it hurts to even look at them right now 😭...
The gp said if it was advanced cancer they were of def seen it on my last letz ..
I'm just wandered weather this is another patch that has turned cin3 rather than the patch they took precious

Bex4567 · 30/12/2022 21:35

Also how can they grade me moderate or servere anf then biopsy be cin 1 surely these people need more training if that's the case 😭no offence to them there probably busy but that dosnt seem right

Walkaround · 30/12/2022 22:41

@Bex4567 - you can’t always be accurate about the level of severity from a smear, due to the fact it’s a bit of a random scraping of cells, not a targeted selection like a biopsy is, so they don’t have enough of the abnormal cells to look at to be certain how deep into the cervix the abnormality has spread or how abnormal all the abnormal cells look, as they just have that little, random sample to go on. A smear result is not a diagnosis of anything, it’s an indication you need more tests.

As for the colposcopy missing an abnormal area the first time, I should imagine that’s possible, but significantly less likely if you already have cancer than if you just have low grade CIN, and whilst it is possible for CIN to progress in 6 months, the chances of it progressing to become cancer in such a short time are very small. Basically, statistically speaking rather than emotionally, you are highly unlikely to have cancer. That doesn’t prevent the whole process being unpleasant and upsetting though, of course. x

Walkaround · 30/12/2022 22:51

In conclusion, if I were you, I would be feeling reassured that they only found CIN 1 at your last colposcopy.

Bex4567 · 31/12/2022 00:14

If you can't be accurate about the severity of the cells then they could be worse than cin 3 then aswell as the other way around....😭I thought high grade servere means it's the whole area of the smear or could it just be a patch

justanothermummma · 31/12/2022 00:42

Been in the same boat OP! Last Feb I felt like my world had fell apart.

You'll get the cells lasered away (if you have a coil they'll take it out to do it and replace it after), you will be sore, emotional and scared but there will be HCA's to hold your hand and give you gas and air!

Afterwards you'll await results about the cells, usually delivered by letter and if not cancerous you'll go on a 6 monthly smear check. After the 6 months you'll know realistically if they removed enough based on the results.

As scary as it is, the fact they've caught it at this stage is a good thing. Had you not had your smear for a year or so, it may be different. I went from HPV negative to HPV Positive and with Severe D(cannot spell it) in a year, so do keep to a regular smear.

Look after yourself OP. Sending love.

Bex4567 · 31/12/2022 00:58

Thanks for your message I've already had a colloscopy and leltz 6 months ago biopsy came back cin 1 ...
This is my follow up 6 month check which came back high grade servere this is why I'm panicking im like how 🤦‍♀️I'm hoping th3 smear is wrong and it's not as bad as that

Walkaround · 31/12/2022 03:23

Bex4567 · 31/12/2022 00:14

If you can't be accurate about the severity of the cells then they could be worse than cin 3 then aswell as the other way around....😭I thought high grade servere means it's the whole area of the smear or could it just be a patch

@Bex4567 - your most accurate result to date has been CIN1, so you are catastrophising to conclude a smear result indicating CIN3 a mere six months after a biopsy indicated a small area of cells were mildly dyskariotic, actually means cancer.

If you actually ask to see the magnified image of your cervix on the screen at your colposcopy, you’ll see that none of CIN 1, 2 or 3 mean your entire cervix looks abnormal or is completely covered in a layer of abnormal cells. The acetic acid makes the tiny area or areas on your cervix where there are abnormal cells present visible, so that the biopsy/ies can be accurately directed at it/them. A smear just scoops up normal and abnormal cells in a big sweep of the top layers and then a highly trained professional has to interpret what they see. If your entire cervix were covered in abnormal cells to its full depth, they’d have to remove the whole cervix to get rid of them, wouldn’t they - but that’s not what they do, because that is not what happens or how it works!

Yes, it is true that until they’ve had another look and taken a another biopsy, you don’t know exactly what the problem is. The least likely answer, though, is that you already have cancer - you would be very unlucky for it to be cancer, as are most women who go through this. Just the chance it could be is horrible enough, but you do not have to torture yourself by convincing yourself the unlikely is in fact likely.

YoBeaches · 31/12/2022 04:53

OP do you have HPV? Was it confirmed on your last test?

YoBeaches · 31/12/2022 05:05

Sorry I can see you were confirmed with HPV.

Bare in mind that anyone can get a high grade result, not just those with HPV.

It's very common and what you're going through is routine. This activity is all preventative of cancer not diagnostic of it.

The labs that test the smears will always refer if they cannot be certain of high or low grade given it's a human eye Looking at a Petrie dish.

We're lucky in the UK to have such effective preventative care pathways.

Bex4567 · 31/12/2022 11:26

I understand what your saying and I no im thinking the worst 😭but I just guess I need to take comfort in the fact the biopsy was cin 1 six months ago 😭...I just always thing they could of missed something...and how can high grade servere look like cin 1 😭coz they obv seen some cin 3 to put my grade as that 😭....
Just worried if they can get my smear wrong saying cin 3 when my biopsy was cin1 ....then they can get it wrong the other way and miss cancer cells for cin 3 does that make sence ....
I appreciate your reassurance tho it has helped me I hope I come out next wed feeling more relaxed assured....ill be like I thjnk I'm dying 😭the lady's last time were lovely so I hope I get them again.
How would you feel if you had my results would u panic??? After having cjn 1 a few months back

Bex4567 · 31/12/2022 11:28

Thabkypu for your reply...I understand that but they must of seen servere cells to put it down as that 😭otherwise they would of put moderate like last time....Ill have to take comfort I guess of my cin 1 biopsy 6 months ago 😭and hold on to that well try to...it was just a complete shock most people I've spke to they follow up eas normal or they just had low grade cells there not worse than before I even had it done thats why I'm worried 😭

YoBeaches · 31/12/2022 11:46

Your smear wasn't wrong OP. They detected abnormal cells and they were right.

Eyeballing a set of cells in a Petrie dish is not an exact science. The lab technician made an estimate based on their training. There is often not a lot between labelling CIN1-3.

The biopsy is fact - it's a different test. You had CIN 1.

This time the lab technician thinks there maybe some cells they would choose to label as CIN 3- same process applies.

They have not at any point found any cancerous cells at all.

I have been in your shoes. It's common practice and happens to thousands of women every week.

It's why our mortality rate of cervical cancer have dropped significantly - with over 99.8% now preventable through screening and treatment.

You are in safe hands.

Bex4567 · 31/12/2022 12:38

Thankyou for your kind words..I just feel so many women have had success on the first treatment 😭and not had issues but mine had come back worse 😭
I wonder if biopsy can be wrong....
I've got an sore muscle in my bum that is making my leg ache and I no leg pain ins a sign of advanced cervical cancel so I'm thinking I have that now...
But I thought if that was the case they would of picked did up 6 months ago on the colposcopy 😭....
I'm hoping my smear results arnt as bad as they make out I guess I'm just worried that they have seen cin 3 but maybe there cancer cells as I think cin 3 and cancer cells looks pretty simular...

YoBeaches · 31/12/2022 13:00

Have you ever spoken to a GP about your health anxiety?

Bex4567 · 31/12/2022 13:18

Yes I've upped my citalipram...I think if I do have cancer it would literally put me ina mental home 😭😭

Bex4567 · 31/12/2022 13:18

Wpuld you not be worried if you had my results

Sancerre2 · 31/12/2022 13:44

However, it is estimated that 5% of CIN 2 and 12% of CIN 3 cases will progress to invasive cancer if untreated. In general, it takes 10 to 20 years for CIN to progress to cancer, allowing a significant time period for detection and treatment. Progression from CIN to cancer requires persistent HPV infection.

anx12345 · 31/12/2022 13:47

@Helpsmearresult how are you op?

Bex4567 · 31/12/2022 13:56

I have hpv and mine seems to have gone from cin 1 to cin 3 in 6 months unless my smear is wrong 😭..my last smear was moderate cin 2 but letz was cin 1 so I'm hoping it's wring

YoBeaches · 31/12/2022 15:29

Bex4567 · 31/12/2022 13:18

Wpuld you not be worried if you had my results

I would be a little Anxious awaiting the procedure, but with a high degree of confidence that it will be fine.

In comparison you are convincing yourself you have full blown cancer.

When did you increase the meds?

Bex4567 · 31/12/2022 15:38

Yesturday .the procedure dosnt bother me I've had it done before I'm not nervous about that I'm nervous she's going to look and say I have cancer 😭

MrsPnut · 31/12/2022 16:26

Even in the highly unlikely event of it coming back as a cancer diagnosis, it isn't the death sentence you fear it to be.

Treatment for Cervical (and vaginal) cancer is pretty quick in the scheme of things. 5 weeks of chemo rads and then a few sessions of brachytherapy and then on to 3 monthly MRI scans and seeing your oncologist regularly.

I had an abnormal smear in 2015 and went for a colposcopy where they couldn't see any changes to my cervix at all. I'd had a lletz in 2003 so knew what to expect.
In 2020, I realised I was bleeding after sex and had missed my smear so went along to the nurse, she did swabs, a smear and gave me my flu jab before referring me for an ultrasound.
My smear came back abnormal and I went for a colposcopy, the nurse doing it decided she didn't like something and went off to get the consultant.

I had biopsies taken and told I had vaginal cancer to the posterior wall. I had a CT scan etc as it is a rare primary to have and found out from that I also had breast cancer.

2 years later, I have been back at work for 9 months. My hair has grown back from my breast cancer chemo - I didn't lose it with the vaginal cancer chemo.

I am regularly seen, scanned and prodded so I am confident that any reoccurrence will be found quickly.

Hopefully your colposcopy on Wednesday will be good news.

Bex4567 · 31/12/2022 16:36

That didn't help my anxiety but thankypu hope your ok now

Bex4567 · 31/12/2022 17:10

When was your last smear 2015 before 2020 x