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

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!!)

That really isn’t why.

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

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.

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.

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

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.

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

But then why was OP advised to go private?

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?

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 🙄).

Why? It’s cheaper no doubt.

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).

They used to do cytology on every women though

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.

I hardly think a smear test is invasive. A colonoscopy, an ERCP maybe which DH has to have every 3 years. For many years smears have saved the lives of thousands of women. It's been a godsend and was a game changer. Can we not vilify it please. Posts like this encourage women to not bother going and take up rates of smear tests are a record low.

I think we all agree with you that they're vital and save many lives. The poster refering to them as invasive was making the point that in most cases it's only the HPV test that's processed, though, and this can be done with a simple swab, with no need for a speculum, or indeed a GP/nurse visit.

Smear tests are meant to pick it up when there are no symptoms.

if you have symptoms it’s developed too much!

This is a concern for me too frankly

Yes - I definitely agree.

It would actually pick up more women who don’t routinely go for smears due to the invasive (and sometimes painful) procedure.

I actually thought they were considering this?

I disagree - of course it’s invasive!

Have you read Margaret McCartney’s The Patient Paradox - Why sexed up medicine is bad for your health?

You've made a good point here with the use of the word 'painful'. I've always found them painful, not just uncomfortable. The same with colposcopy - it's not agony, sure, but the claims around the lack of nerve endings in the cervix don't match up with the experiences I've had. It seems depressingly typical of women's medicine that you are expected to endure things without anaesthetic or when alternatives would be possible that men wouldn't be expected to.

I had a cerclage when pregnant (due to a LLETZ shortening my cervix). I was told to 'come in at 8am and we'll pop a stitch in'. Its probably on me that I didn't look it up, but for those that don't know (I didn't) for me 'popping a stitch in' involved a procedure in an operating theatre where they sew your cervix closed with a thick tape pulled tight like a purse string, being kept in over night (didn't know this was a possibility) and then being told after the fact 'if you have any signs of going into labour get into hospital quickly because your cervix will tear before the stitch if you dilate'. I just can't imagine a scenario where men would be left as unprepared for what was essentially surgery as I was.

I completely agree. I asked the nurse at my last smear what the point of doing it was as I have definitely not got HPV. She couldn't really answer. It needs more publicity.

My daughter was called for a smear recently- she has been vaccinated against HPV already so I’m not sure what the point is of putting a young woman through it?

I’ve also just attempted to look up deaths (UK) due to non HPV cervical cancer and I can’t find any statistics. I would quite like to know those rates as opposed to statistics on women with abnormal cells which may not go on to be cancerous.

HPV-independent cancers tend to be diagnosed at later stages and some kinds are very aggressive and resistant to treatment (eg Gastric Type AIS) but they are MUCH rarer than HPV-dependent and the numbers involved are small. I absolutely don't want to cause worry here, because it isn't warranted - I just want to make sure people pay attention to symptoms and to voice frustration that HPV primary testing was brought in at roughly the same time as HPV vaccination.

In 2022, there were 350,000 deaths worldwide from cervical cancer and it's thought that around 19k of those were HPV-independent (around 5%), although there is no 'registry' for the individual types, so that's estimated. So relatively few, but increasing as a % as overall cases decline.

Source

Someone mentioned earlier that their HPV-independent diagnosis came after a medical professional visually observed changes to the cervix. That's certainly a benefit of going for testing, even if you've had a vaccination.