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

[ThisPithyJoker]

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

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.

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

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.

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.

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.

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?

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.

I mean that’s a joke isn’t it.

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.

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

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

yes the good old fashioned smear test

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.

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

So what, I go and pay for it privately?

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.

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

publichealthscotland.scot/news/2024/january/no-cervical-cancer-cases-detected-in-vaccinated-women-following-hpv-immunisation/

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!

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.

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.

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.

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

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.

What is CIN please?