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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:
ShockedandStunnedRepeatedly · 18/04/2025 21:38

FedupofArsenalgame · 18/04/2025 21:36

yes the good old fashioned smear test

Edited

So what, I go and pay for it privately?

countrysidedeficit · 18/04/2025 21:37

That's the same for all cancer screening programmes, not just cervical cancer.

countrysidedeficit · 18/04/2025 21:37

FedupofArsenalgame · 18/04/2025 21:33

But you can have cervical cancer with absolutely zero symptoms. I had none of the symptoms but still diagnosed with cancer.

Mine was hpv related but I think it's wrong they just do hpv tests rather than a " proper" smear .

If someone has no symptoms and is hpv negative then there's a good chance the cancer won't be picked up until it's much further on.

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.

FedupofArsenalgame · 18/04/2025 21:36

ShockedandStunnedRepeatedly · 18/04/2025 21:30

I was quite worried about this when I read about the changes. Thanks for highlighting. Is there anything we can do to catch / test for these non HPV types?

yes the good old fashioned smear test

Sidge · 18/04/2025 21:36

fashionqueen0123 · 18/04/2025 21:32

I mean that’s a joke isn’t it.

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

countrysidedeficit · 18/04/2025 21:34

Frowningprovidence · 18/04/2025 21:29

That's why I'm grateful to op. Because my last smear test was clear, I thought, well I can't have cervix problem then.

My GP is hit and miss. I got a text message saying probably perimenopause in response to me completing an online appointment form saying I was tired, had bleeding between periods and after sex.

I will recomplete the form asking if this thing op mentions is something that could be properly looked at (and other causes). this is the only way we can contact the GP.

Oh, that's a bit crap. Definitely don't be afraid to directly ask if they have considered the risk of cervical cancer.

FedupofArsenalgame · 18/04/2025 21:33

countrysidedeficit · 18/04/2025 21:06

If you have symptoms, you make a GP appointment for investigation. That has always been the case.

Cervical screening has never been a diagnostic tool for a patient presenting with symptoms, it's population screening to identify pre-symptomatic issues.

But you can have cervical cancer with absolutely zero symptoms. I had none of the symptoms but still diagnosed with cancer.

Mine was hpv related but I think it's wrong they just do hpv tests rather than a " proper" smear .

If someone has no symptoms and is hpv negative then there's a good chance the cancer won't be picked up until it's much further on.

fashionqueen0123 · 18/04/2025 21:32

ThisPithyJoker · 18/04/2025 20:03

You can. After I'd had treatment for my condition, I was encouraged to do just that by the consultant to get Test Of Cure as the NHS Test of Cure was (you guessed it) an HPV test. In the end I managed to get a second opinion and another consultant contacted the lab to request that cytology was performed regardless of HPV status.

I mean that’s a joke isn’t it.

fashionqueen0123 · 18/04/2025 21:31

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.

I agree.
Luckily my area was one of the last to switch to the new system so I had a proper smear test a few years ago.

It seems pointless going now. I’m so cross. I’ve seen so many women say they had no HPV but needed treatment and now that wouldn’t be picked up! Even if you go with symptoms all they’ll do is test for hpv.

ShockedandStunnedRepeatedly · 18/04/2025 21:30

I was quite worried about this when I read about the changes. Thanks for highlighting. Is there anything we can do to catch / test for these non HPV types?

Frowningprovidence · 18/04/2025 21:29

That's why I'm grateful to op. Because my last smear test was clear, I thought, well I can't have cervix problem then.

My GP is hit and miss. I got a text message saying probably perimenopause in response to me completing an online appointment form saying I was tired, had bleeding between periods and after sex.

I will recomplete the form asking if this thing op mentions is something that could be properly looked at (and other causes). this is the only way we can contact the GP.

ThisPithyJoker · 18/04/2025 21:28

Frowningprovidence · 18/04/2025 21:14

I think I really meant is this on gp's radar or would I need to say 'could it be this please look specifically at this'.

I have these symptoms and I have been told its probably perimenopause, but haven't had any investigations.

I was referred to Colposcopy following two negative HPV tests because I was concerned it may be something more serious as I'd had low grade changes removed years before, so they can refer you for more investigation. It wouldn't necessarily be on a GPs radar as the NHS is very focussed on HPV being the main cause of problems (which it absolutely is - just not the only cause). Statistically, the GPs probably right and it's probably nothing to worry about, but based on my experience, I'd encourage you to ask to be referred just to make absolutely sure there's nothing else going on. There are other things apart from cell changes that can cause bleeding (like cervical erosion) that they can treat at colposcopy, too.

OP posts:
Fly1ngG1raffe · 18/04/2025 21:27

You should never ignore those symptoms, doesn’t matter whether you’ve had an old style smear or an HPV screen. It’s a screening tests, it isn’t perfect, symptoms trump a normal screening tests.

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)

GlitteryUnicornSparkles · 18/04/2025 21:26

I’ve also had CIN 1 which increased to CIN 3 with multiple negative HPV results.

I was told a negative result doesn’t mean you don’t have it as it can lie dormant and will only show if it’s currently active at the time of smear. Based on this I think the new system is going to fail many.

Sidge · 18/04/2025 21:24

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?

It’s not zero reason. It allows for a visual examination of the cervix and detects HR-HPV infection as well as allowing sampling of the cervix in case cytology IS needed.

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.

countrysidedeficit · 18/04/2025 21:23

Frowningprovidence · 18/04/2025 21:14

I think I really meant is this on gp's radar or would I need to say 'could it be this please look specifically at this'.

I have these symptoms and I have been told its probably perimenopause, but haven't had any investigations.

It should be on a competent GP's radar, yes. It's their job to recognise and evaluate risks of cancer when a patient presents with symptoms.

If you are concerned and have received no investigations of any kind before they shrugged and said "probably perimenopause" then you would be well within your rights to go back and push.

Sidge · 18/04/2025 21:22

ThisPithyJoker · 18/04/2025 21:00

There's a difference in HPV prevalence between squamous (CIN) and adenocarcinoma (CGIN) changes and the associated cancers, though. CIN is usually HPV associated (although not always, as previous posters have mentioned in relation to themselves), but it's more common for CGIN to be HPV-independent.

The 99.7% figure comes from a 1999 paper. The current WHO accepted figure is 95%. It's changed very rapidly since the introduction of the HPV vaccination.

I know. That’s why I said CIN is not cancer. The most important thing is that women attend for screening. HPV screening will still identify the vast majority of CIN changes and allow early intervention to prevent invasive changes.

Frowningprovidence · 18/04/2025 21:14

countrysidedeficit · 18/04/2025 21:06

If you have symptoms, you make a GP appointment for investigation. That has always been the case.

Cervical screening has never been a diagnostic tool for a patient presenting with symptoms, it's population screening to identify pre-symptomatic issues.

I think I really meant is this on gp's radar or would I need to say 'could it be this please look specifically at this'.

I have these symptoms and I have been told its probably perimenopause, but haven't had any investigations.

countrysidedeficit · 18/04/2025 21:06

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 agree, but this is women's healthcare so...

countrysidedeficit · 18/04/2025 21:06

Frowningprovidence · 18/04/2025 19:43

Thank you.

If it's not picked up in a routune smear how do you find out?

Do you have to say to your GP it's a concern if you present with those symptoms or will it be something they would raise themselves.

If you have symptoms, you make a GP appointment for investigation. That has always been the case.

Cervical screening has never been a diagnostic tool for a patient presenting with symptoms, it's population screening to identify pre-symptomatic issues.

Abra1t · 18/04/2025 21:02

A friend of mine died from this. They thought it was either menopause or a gastrointestinal issue and chemo and radiotherapy couldn’t save her.

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?

ThisPithyJoker · 18/04/2025 21:00

Sidge · 18/04/2025 20:44

CIN is not cancer. So not included in stats.

99.7% of cervical cancers are caused by HR-HPV.

Obviously women receive treatment for CIN, some of which may be HR-HPV negative, but most are positive.

It’s only colloquially called a smear test - we refer to it as primary HPV screening.

There's a difference in HPV prevalence between squamous (CIN) and adenocarcinoma (CGIN) changes and the associated cancers, though. CIN is usually HPV associated (although not always, as previous posters have mentioned in relation to themselves), but it's more common for CGIN to be HPV-independent.

The 99.7% figure comes from a 1999 paper. The current WHO accepted figure is 95%. It's changed very rapidly since the introduction of the HPV vaccination.

OP posts: