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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think I may as well ignore my invite for cervical screening

200 replies

annlee3817 · 13/05/2023 22:44

I don't take this lightly, but I am HPV negative, I had CIN2 in 2014, and the abnormal cells were removed. I believe that now if I go for a smear, they will test me for HPV and if still negative, they won't check for abnormal cells.... So what is the point in me getting a smear? I thought having had CIN2 they'd check mine on that basis, but apparently not... My cousin had CIN3 and also HPV negative 🤷

OP posts:
Tandora · 14/05/2023 23:28

Makingupfactstosuitmyagenda · 14/05/2023 16:37

I have not seen visual examination for condition or symptom x,y,z communicated as an objective of screening and I have read the leaflets I’ve been sent very carefully. NICE don’t seem to suggest this is the case. https://cks.nice.org.uk/topics/cervical-screening/background-information/benefits-harms-of-cervical-screening/ it may be a side effect of seeing a vagina but if the staff aren’t trained and exposed to enough examples then surely it’s happenstance? Like if I go to the dr with a dodgy back and they look and see a worrying mole; they’d point that out? I also found this when I had a Google ; The CVAG is a visual educational tool developed by health professionals specialising in colposcopy and gynaecology. In response to local trust audit results and regional colposcopy data they suggest some primary health workers’ have little experience of recognising the signs and symptoms of invasive cancer of the cervix. Subsequently, a significant number of women are referred to oncology and colposcopy clinics with suspected cancer of the cervix in the absence of disease. (https://www.newcastle-hospitals.nhs.uk/content/uploads/2020/11/Guidance_for_Good_Practice_-_5th_Edition.pdf) I feel that the benefits of visual inspection are being overstated here and could lead to false reassurance or, as the Newcastle ref suggests, over treatment/ over referral. I suspect that there will be a move to home HPV testing very soon for everyone anyway.

Thank you for this it’s very informative.

Tandora · 14/05/2023 23:31

SurferRona · 14/05/2023 16:15

@Mumdiva99 that isn’t correct to say all cervical cancer is HPV related. They are not. 90% ish of cervical cancers are HPV linked, so 1/10 women who have cytological changes and pre cancer cells, or even cancer would not be picked up by this new screening. Neither would those who carry HPV, have higher risk, but were negative at testing. The new test also only detects two prevalent strains of HPV, accounting for 70% of 90%. Suddenly feeling quite far off ‘all’ isn’t it? I reviewed pubmed journals about this, this article is about right: https://www.obermair.info/latest-news/blog/how-common-is-non-hpv-cervical-cancer/#:~:text=Non%2DHPV%20cervical%20cancers%20are,their%20last%20Cervical%20Screening%20Test.

Thanks for sharing. I was really confused and disturbed when I found out at my latest smear that they weren’t even looking for abnormal cells anymore, just screening for HPV. The nurse tried to convince me it had always been that way, and there was no issue- I was totally confused. Surely this will result in a spike in preventable deaths from cervical cancer? 😔😡

NowZeusHasLainWithLeda · 15/05/2023 06:24

SausageMonkey2's post.

NegativeNelly · 15/05/2023 07:39

It doesn't matter if you're sexually active

Oblomov23 · 15/05/2023 07:59

What I can never understand on these threads is why this was ever allowed to happen? Money obviously. We should complain, and get them to go back to the old style smears.

"Before 2019, cytology tests, otherwise known as smear tests, checked cervical cells for abnormalities first. "

So, they slipped it in, 2019. I didn't even know, till a mn thread enlightened me. Disgusting.

Tandora · 15/05/2023 08:22

NowZeusHasLainWithLeda · 15/05/2023 06:23

I get the logic if it works, But how does that post tally with the idea that HPV can lie dormant- So you can test negative and still have it?
And so many women on this thread have had abnormal cells together with a negative HPV test.

shyalice · 15/05/2023 08:28

Tandora · 15/05/2023 08:22

I get the logic if it works, But how does that post tally with the idea that HPV can lie dormant- So you can test negative and still have it?
And so many women on this thread have had abnormal cells together with a negative HPV test.

Smear tests only check for HPV now. This means that if you have abnormal cells but not HPV then this will no longer be picked up on smear tests. Likewise if you have HPV but it is dormant on the day of your smear the HPV or any abnormal cells will not be picked up on either. That’s actually scary.

shyalice · 15/05/2023 08:30

Personally if this appointment at the hospital fails for me tomorrow then I am not going to bother with another smear. I will just buy a home HPV testing kit instead.

justteanbiscuits · 15/05/2023 09:13

So much ignorance about HPV and cervical cancers in here.

Though you can test negative for HPV in one smear, the nature of HPV is that it can "come and go". Testing negative is no guarantee you will still test negative in the future, even without having sex. Think of it like cold sores - once you have the virus, it can go dormant and return without any further exposure.

Over 95% of cervical cancers are caused by the HPV virus. Cervical cancer not caused by HPV is very rare.

Condoms do not provide adequate protection against HPV.

Nordicrain · 15/05/2023 09:16

The NHS is pretty tight on screening programs, so not I wouldn't miss one.

gallina · 15/05/2023 09:21

I wish they'd screen more often than 3 years.
Just go. Even if you think it's unnecessary, always go

Makingupfactstosuitmyagenda · 15/05/2023 09:42

https://www.rcn.org.uk/workingwithus/-/media/Royal-College-Of-Nursing/Documents/Working-with-us/Endorsements/Cervical-Screening-Wales-Sample-Taker-Reference-Guide.pdf

this is a really good guide (as you might expect from RCN). It’s definitely best practice and my tests have sometimes missed many of the elements described.

there is a section on visual assessment; this seems to be primarily for the purpose of obtaining a sample correctly. Though there is a reference to checking external genitalia, I didn’t see a mention of for what and there is also this statement Cervical cancer is rare in the UK and many sample takers will never see a single case. It is a very uncommon outcome from a very common virus all in all, my view is that the visual side is overvalued by pp and I wonder if this element is confused with a visual assessment used in some countries that involves staining the cervix with acetic acid for a better visualisation?

this document also has a good explanation of why HPV testing is actually better and addresses the ‘what if I’m not testing positive at the time of the test’ question.

https://www.rcn.org.uk/workingwithus/-/media/Royal-College-Of-Nursing/Documents/Working-with-us/Endorsements/Cervical-Screening-Wales-Sample-Taker-Reference-Guide.pdf

Tandora · 15/05/2023 10:02

Makingupfactstosuitmyagenda · 15/05/2023 09:42

https://www.rcn.org.uk/workingwithus/-/media/Royal-College-Of-Nursing/Documents/Working-with-us/Endorsements/Cervical-Screening-Wales-Sample-Taker-Reference-Guide.pdf

this is a really good guide (as you might expect from RCN). It’s definitely best practice and my tests have sometimes missed many of the elements described.

there is a section on visual assessment; this seems to be primarily for the purpose of obtaining a sample correctly. Though there is a reference to checking external genitalia, I didn’t see a mention of for what and there is also this statement Cervical cancer is rare in the UK and many sample takers will never see a single case. It is a very uncommon outcome from a very common virus all in all, my view is that the visual side is overvalued by pp and I wonder if this element is confused with a visual assessment used in some countries that involves staining the cervix with acetic acid for a better visualisation?

this document also has a good explanation of why HPV testing is actually better and addresses the ‘what if I’m not testing positive at the time of the test’ question.

They say it’s a “better allocation of resources”, that sounds like it’s about efficiency to me. I can’t see how this won’t lead to more deaths. other estimates suggest that c cancer with neg HPV may be as high as 11%. Then there is the up to 7% risk of a false negative, and I’m still not clear on the “dormancy” issue. Look at the number of women on this thread alone who have had abnormal cells with a negative HPV test.

BadNomad · 15/05/2023 10:51

It's because abnormal cells just means there are changes to the cells. It isn't cancer and in most cases won't develop into cancer. The chance of developing cancer is higher in those with HPV. How much higher depends on the strain of HPV and how active the infection is. i.e multiple positives means a higher risk. Whereas in the past, many women were going through invasive and painful procedures to treat these changes which were "normal" changes and never going to develop into cancer. So they've decided that it is a waste of resources and that is why they are focusing on HPV now.

lemonchiffonpie · 15/05/2023 11:07

Oblomov23 · 15/05/2023 07:59

What I can never understand on these threads is why this was ever allowed to happen? Money obviously. We should complain, and get them to go back to the old style smears.

"Before 2019, cytology tests, otherwise known as smear tests, checked cervical cells for abnormalities first. "

So, they slipped it in, 2019. I didn't even know, till a mn thread enlightened me. Disgusting.

If you want to see the science, in countries which have been using HPV testing first for a longer period shows that if 1,000 people are screened, about 20 people will have abnormal (pre-cancerous) cervical cells. The studies go on to show:

  • In screening with a cytology smear test, 15 of these 20 people will have these cells found – five people will not, and may go on to develop cervical cancer. This makes the old cervical smear test 75% accurate.
  • In screening with a HPV-first test, 18 of these 20 people will have these cells found – two people will not, and may go on to develop cervical cancer. This makes the new cervical smear test between 85-90% accurate.

“Primary HPV testing is a much better test,” Dr Russell said. ”With cytology, or smear tests, there’s a one in 200 false negative rate. So one in 200 women are given the normal results, and actually the abnormality is there but not detected. Whereas with HPV testing, that goes down to one in 500. So it’s a much better test.”

“So you’re very likely to be in the 980 women who get the negative result. And you’re very unlikely to be one of the two women in that 20 who get a negative result [when there is an abnormality].”

Why is CervicalCheck using HPV tests instead of testing for all smear abnormalities? (thejournal.ie)

bd67thSaysReinstateLangCleg · 15/05/2023 21:20

I think that people don't realise that cytology screening is based on staining the cells and using the Mark 1 Human Eyeball to search visually for abnormal cells through a microscope. It's inherently an error-prone process, especially towards shift end when the cytologists are tired.

The precise nature of the wizardry known as "polymerase chain reaction" testing is beyond my science-fu, but crucially it doesn't rely on humans spotting odd-looking cells on a slide full of cells to work.

bd67thSaysReinstateLangCleg · 15/05/2023 21:24

Spot the abnormal cells on here. It's like a Where's Wally? book.

To think I may as well ignore my invite for cervical screening
Tandora · 15/05/2023 21:28

BadNomad · 15/05/2023 10:51

It's because abnormal cells just means there are changes to the cells. It isn't cancer and in most cases won't develop into cancer. The chance of developing cancer is higher in those with HPV. How much higher depends on the strain of HPV and how active the infection is. i.e multiple positives means a higher risk. Whereas in the past, many women were going through invasive and painful procedures to treat these changes which were "normal" changes and never going to develop into cancer. So they've decided that it is a waste of resources and that is why they are focusing on HPV now.

Ahh I see. This makes more sense- thank you

Elphame · 16/05/2023 20:18

justteanbiscuits · 15/05/2023 09:13

So much ignorance about HPV and cervical cancers in here.

Though you can test negative for HPV in one smear, the nature of HPV is that it can "come and go". Testing negative is no guarantee you will still test negative in the future, even without having sex. Think of it like cold sores - once you have the virus, it can go dormant and return without any further exposure.

Over 95% of cervical cancers are caused by the HPV virus. Cervical cancer not caused by HPV is very rare.

Condoms do not provide adequate protection against HPV.

And what happens then if you have pre-cancerous cells but your HPV is going through a negative phase? They won't be picked up and women will die because of this.

bd67thSaysReinstateLangCleg · 16/05/2023 21:23

Elphame · 16/05/2023 20:18

And what happens then if you have pre-cancerous cells but your HPV is going through a negative phase? They won't be picked up and women will die because of this.

Maybe that's why women in this thread have mentioned annual recalls instead triennial ones.

LT2 · 16/05/2023 21:41

I have today bought myself a HPV self test. I've done this before. It is the same as a smear test now, as they only look for HPV. So despite what many think, it isn't essential to have smear tests. As long as you test for HPV somehow. I am also not high risk because I've only been with one person (and him the same, so where would the HPV come from!?)

Elphame · 16/05/2023 21:42

bd67thSaysReinstateLangCleg · 16/05/2023 21:23

Maybe that's why women in this thread have mentioned annual recalls instead triennial ones.

And others have said that HPV can lie dormant for many years. Even annual recalls will make no difference if the sample continues to pass the HPV test. It's purely a matter of chance as to whether the HPV is active or not at the time of the smear.

Melroses · 16/05/2023 22:47

bd67thSaysReinstateLangCleg · 15/05/2023 21:24

Spot the abnormal cells on here. It's like a Where's Wally? book.

Ah yes I tried that for a while. It hurts.

There were lots of procedures and cross checking (which is probably why the results used to take so long to come) to ensure it was as accurate as possible.

The old 'scrape' was never highly accurate and although they have changed to the liquid cytology, the new primary HPV screening is way more effective which is why it is such a money save.

I wish they would develop some screening tests for the things I am more likely to die from though.

Mintmeanderings · 19/05/2023 18:10

The reason they changed tests is because the hpv testing misses fewer cases, as a pp has pointed out. Cases will still be missed now, but fewer. The old method of testing had about a 25% false negative rate - that means 1 in 4 cases were routinely missed. So it wasn't the 'perfect' method that some people on here seem to think? It was the best we had.

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