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AIBU?

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Original poster

To highlight that up to 8% of Cervical Cancers are HPV-independent?

115 replies

ThisPithyJoker · 18/04/2025 19:40

Until I was diagnosed with HPV-indepedent pre-cancerous changes, I had no idea they existed. The NHS has moved to primary HPV testing, so smears will no longer catch them. I think it's important that this is made clear so that people don't disregard symptoms (e.g. bleeding between periods or after sex) because they're up to date on their smear tests. I'm not positive that 'smear' is even the correct term anymore for the regular testing at the GP as this is now only an HPV test. Since the introduction of the HPV vaccination, the proportion of HPV-independent cervical cancers is increasing (as HPV caused ones are decreasing, not because there are more cases).

I want to shout it from the roof tops, but I also don't want people to think that going for their regular check ups aren't vital. They are - they still catch 90%+ of potentially pre-cancerous cell changes via referral to colposcopy following an HPV diagnosis. So I'd like to start a conversation about it.

YABU - wider awareness of HPV-independent cervical changes and cancers could dissuade people from getting their regular cervical screening thinking it isn't conclusive since the move to HPV testing

YANBU - do everything I can do to get the message out that an HPV negative result at screening doesn't mean you don't have cell changes or indeed cancer

OP posts:
MeetMeAtTheAPT · 18/04/2025 23:08

countrysidedeficit · 18/04/2025 21:37

Yes but cervical screening is about the risk at population level not individual level.

They're not trying to catch every case, they're trying to catch the most number of cases at population level in the most efficient way. That's always been the case and is how decisions about things like age at first invite, intervals etc are made.

The cervical screening programme has never been trying to catch every case.

Show quote history

Yes so all of us oldies 35+ that didn't receive the hpv vaccine, just don't matter.

I commented on another post this week to state that the non hpv cancer rate is between 3-11% in the uk. This is not a small number of women.

The 'population' is much more than the under 35's (the vaccine was rolled out for this age and below.)

I'm another hpv negative case that had CIN3 cells. Thankfully it was when the old style test was routine and it was picked up on my first ever smear.

Also thank you to Jade Goody for the "Jade Goody effect" she saved a good few lives when her diagnosis increased the uptake for the smear test.

I now pay for private smear tests as I've always been hpv negative but the risk is still very much there.

FedupofArsenalgame · 18/04/2025 22:41

RafaistheKingofClay · 18/04/2025 22:07

Because it’s following international best practice. As said above it’s a screening programme not a system for catching and diagnosing every single case of changed cells.

Vaccination + HPV testing + cytology for those HPV positive or with symptoms seems reasonable as a public health measure. You could do cytology on every woman but then you could also do a colonoscopy on everyone every couple of years regardless of age and a full body MRI or CT.

Also, I’m not sure the OP’s 8% figure is right. I thought it was closer to 0.5%. I thought the 8% figure or figures close to that referred to cervical cancers not caused by the most common HPV strains. It doesn’t mean that all of those are non HPV.

Show quote history

They used to do cytology on every women though

Original poster
ThisPithyJoker · 18/04/2025 22:39

RafaistheKingofClay · 18/04/2025 22:07

Because it’s following international best practice. As said above it’s a screening programme not a system for catching and diagnosing every single case of changed cells.

Vaccination + HPV testing + cytology for those HPV positive or with symptoms seems reasonable as a public health measure. You could do cytology on every woman but then you could also do a colonoscopy on everyone every couple of years regardless of age and a full body MRI or CT.

Also, I’m not sure the OP’s 8% figure is right. I thought it was closer to 0.5%. I thought the 8% figure or figures close to that referred to cervical cancers not caused by the most common HPV strains. It doesn’t mean that all of those are non HPV.

Show quote history

It was closer to 0.5% before the introduction of the HPV vaccine. Much higher as a proportion now. I posted a source earlier, but there's another review Here

I don't disagree with what you've said, but I'm not proposing something new by suggesting cytology is a good way to go - the change to HPV primary testing is the new change. Until recently, cytology was the norm. I know it only catches extra edge cases, but with the HPV vaccine, those edge cases make up an ever increasing proportion of the whole (even if the actual numbers aren't increasing).

Human Papillomavirus-Negative Cervical Cancer: A Comprehensive Review - PMC

Human papillomavirus (HPV) has been the leading cause of cervical cancer for over 25 years. Approximately 5.5–11% of all cervical cancers are reported to be HPV-negative, which can be attributed to truly negative and false-negative results. The ...

https://pmc.ncbi.nlm.nih.gov/articles/PMC7925842/?hl=en-GB

OP posts:
ShockedandStunnedRepeatedly · 18/04/2025 22:32

Unpaidviewer · 18/04/2025 22:19

Thank you OP, I didn't realise the percentage was so high. I was confused at my last smear, why do it and then not test if the HPV comes back negative? What percentage of people test positive for HPV?

Why? It’s cheaper no doubt.

Original poster
ThisPithyJoker · 18/04/2025 22:31

Sidge · 18/04/2025 21:36

Test of cure is an HPV screen with cytology. So they look at the cells too.

Show quote history

Wasn't the case for me. I got a letter saying I was HPV negative, come back in six months. I queried it with the department and spoke to the senior nurse on the phone. Told the cells wouldn't be tested unless HPV positive. At the second follow up (six months post treatment), I asked to speak to the consultant and queried it again. Told the same and that I'd need to go private if I wanted that to be done. On the third follow up I got a second opinion because the were going to try and discharge me back to three yearly smears in the community and the new consultant has sent a request through to the lab to perform cytology regardless for the third swabs (including the extra endocervical one they decided was important at MDT, they've done 3 times and has never been tested 🙄).

OP posts:
Unpaidviewer · 18/04/2025 22:19

Thank you OP, I didn't realise the percentage was so high. I was confused at my last smear, why do it and then not test if the HPV comes back negative? What percentage of people test positive for HPV?

fashionqueen0123 · 18/04/2025 22:13

Sidge · 18/04/2025 21:36

Test of cure is an HPV screen with cytology. So they look at the cells too.

Show quote history

But then why was OP advised to go private?

RafaistheKingofClay · 18/04/2025 22:09

ThisPithyJoker · 18/04/2025 22:05

You can self test if you're prepared to pay for a test. Superdrug sell them. But I do wish it was an option available via the NHS now (if they aren't going to reintroduce cell testing as standard which would be my preference) - lots of women are out off getting tested because of the use of a speculum etc

Show quote history

That is a very good point from a population/public health perspective.

RafaistheKingofClay · 18/04/2025 22:07

FedupofArsenalgame · 18/04/2025 21:40

Well you can buy tbh I cannot see any reason why it was changed. What can the NHS not test for hpv and take sample to look for cell changes at same time

Show quote history

Because it’s following international best practice. As said above it’s a screening programme not a system for catching and diagnosing every single case of changed cells.

Vaccination + HPV testing + cytology for those HPV positive or with symptoms seems reasonable as a public health measure. You could do cytology on every woman but then you could also do a colonoscopy on everyone every couple of years regardless of age and a full body MRI or CT.

Also, I’m not sure the OP’s 8% figure is right. I thought it was closer to 0.5%. I thought the 8% figure or figures close to that referred to cervical cancers not caused by the most common HPV strains. It doesn’t mean that all of those are non HPV.

Original poster
ThisPithyJoker · 18/04/2025 22:05

BurntBroccoli · 18/04/2025 21:51

I quite agree, you should also be able to self test.
I think the fact that private surgeries get paid for smear tests has something to do with a self test system not being rolled out.

Show quote history

You can self test if you're prepared to pay for a test. Superdrug sell them. But I do wish it was an option available via the NHS now (if they aren't going to reintroduce cell testing as standard which would be my preference) - lots of women are out off getting tested because of the use of a speculum etc

OP posts:
midnights92 · 18/04/2025 22:03

Genuinely, thank you for this. Aunt had CC at 30 and I've always been very vigilant, but didn't get the HPV vaccine (part of the early cohort, moved school during the roll out and didn't understand as a teenager it was important to follow up on).

Have had classic symptoms before dismissed as breakthrough pill bleeding and paid privately to rule it out because I was under 25 but if it happened again I probably wouldn't on the basis of a recent clear smear but obviously now that would be false reassurance.

Original poster
ThisPithyJoker · 18/04/2025 22:03

TenderChicken · 18/04/2025 21:59

Yeah that's what concluded. I tested negative for HPV my last smear, so why would I ever bother having a smear again?

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I'm not sure that's how it works, because it's a virus. I think it can lay dormant and then flair up/viral load can increase over time. I think it's still important to get the HPV test regularly if you've ever had sex in the past.

OP posts:
TenderChicken · 18/04/2025 21:59

Everydayimhuffling · 18/04/2025 21:24

This is why I'm not going for smears any more. There's no real way I could catch HPV and that's all they're testing for, so there's no point in me having one.

Yeah that's what concluded. I tested negative for HPV my last smear, so why would I ever bother having a smear again?

Sidge · 18/04/2025 21:57

BurntBroccoli · 18/04/2025 21:51

I quite agree, you should also be able to self test.
I think the fact that private surgeries get paid for smear tests has something to do with a self test system not being rolled out.

Show quote history

That really isn’t why.

IcyAzureMoose · 18/04/2025 21:57

But even a smear isn’t always a great test for non HPV cervical cancer. I was diagnosed with stage 3 cervical cancer the day after the old smear test came back clear, (15 years ago) . I was lucky that the nurse noticed a bit of a red cervix whilst doing my examination and asked the right questions and referred me on. I was told there is a proportion of cervical cancers that don’t get picked up on a smear due to the location - mine being one of them, so it’s not a catch all test anyway, far more important to keep an eye out for symptoms (and then not ignore them like I did!!)

abracadabra1980 · 18/04/2025 21:54

What is CIN please?

BurntBroccoli · 18/04/2025 21:51

Moltenpink · 18/04/2025 21:00

I really think it’s scandalous that women are put through an invasive procedure for zero reason (if they test negative). I’ve had a HPV swab test, and it’s nothing like a smear (no speculum needed). Why oh why is no one shouting from the rooftops about this?

I quite agree, you should also be able to self test.
I think the fact that private surgeries get paid for smear tests has something to do with a self test system not being rolled out.

Burntt · 18/04/2025 21:49

You are not unreasonable. But it’s woman’s health so that’s why it’s happening.

I had abnormal cells on a smear once with bleeding between periods and a few other symptoms I was genuinely worried about cancer and they said just retest in 3 years as normal even when I questioned it. Had two babies since amd my symptoms resolved so I assume it wasn’t cancer but had it been would I have survived? Woman’s healthcare is appalling if men got cervical cancer they wouldn’t roll back their tests for it

AliceMcK · 18/04/2025 21:49

I was really pissed off after moving back to the uk to find out this is the practise, made worse by being spoken down to when I raised my concerns. I had cervical cancer, never had any traces of HPV. After treatment I spent 10 years overseas having annual smears, then I moved back to the uk to be told I was hpv clear so didn’t need annual smears anymore. Even before my cancer I had annual smears from the age of 17 in the uk due to constant abnormalities. I’ve since found out in the last 6 six years that many women in my family had had cervical cancer, but they are of an era where they didn’t speak about it so I never knew.

Original poster
ThisPithyJoker · 18/04/2025 21:45

countrysidedeficit · 18/04/2025 21:37

Yes but cervical screening is about the risk at population level not individual level.

They're not trying to catch every case, they're trying to catch the most number of cases at population level in the most efficient way. That's always been the case and is how decisions about things like age at first invite, intervals etc are made.

The cervical screening programme has never been trying to catch every case.

Show quote history

I agree with everything you've said there, but I find it frustrating that until recently cells were tested by default and that HPV vaccination & HPV primary testing were brought in at roughly the same time. And that the decision to bring in the latter was based on the 99.7% statistic that predated the former. Co-testing would catch virtually all cervical cancers in the general population.

OP posts:
OrchidFlakes · 18/04/2025 21:45

I was CIN3 HPV negative 19 years ago. The whole HPV thing makes me so angry as so many people will slip through the net.
I was lucky that I was treated privately after 2+ years of NHS misdiagnosis and general mess ups and managed to retain my cervix albeit with a large chunk removed but still managed to carry two babies to term thanks to an awesome feral medicine team after one miscarriage.
The message needs to be got out there that HPV isn’t the be all and end all for cervical cancer.

ShockedandStunnedRepeatedly · 18/04/2025 21:44

its a measure of how much my life has changed since I had my kids that I have no clue if I’m vaccinated or not! Previously I would have known all this stuff… too busy now!

FedupofArsenalgame · 18/04/2025 21:40

ShockedandStunnedRepeatedly · 18/04/2025 21:38

So what, I go and pay for it privately?

Show quote history

Well you can buy tbh I cannot see any reason why it was changed. What can the NHS not test for hpv and take sample to look for cell changes at same time

Original poster
ThisPithyJoker · 18/04/2025 21:40

bge · 18/04/2025 21:26

How does this match up with there being 0 cancers in vaccinated women in Scotland? (HPV vaccinated I mean)

Oh that's very interesting - I hadn't read about that! I'm not an expert by any stretch so my answer is definitely 'I don't know'. Given HPV vaccination of 12/13 year olds only started in 2008 (17 years ago), though, that cohort will only be 29/30 now. HPV-independent cervical cancer tends to be diagnosed at a later stage and an older age than HPV-dependent (50 years vs 45), so 29/30 is still very young. HPV-independent changes are much more rare than hr-HPV related changes and the associated cancers, so a young cohort and Scotland having a relatively small population could account for it. I'm intrigued - I'm going to try and find out the statistics to do the maths for the odds of that being the case.

OP posts: