While at work and without any sort of presence of a medical professional, Katie Hirst found out via an online portal she had cervical cancer.
As horrific as that diagnosis was, she never imagined she’d have to face that moment alone and unsuspecting.
‘I completely broke down, and I was sobbing while saying “I don’t want to die”,’ Katie recalls.
It was in 2019 that she found herself at the helm of a terrifying diagnosis after a smear test – at which point she’d had abnormal bleeding for two years and had been fighting to be taken seriously by her GP.
However, while Katie was treated and is now in remission, the 28-year-old supplier relationship manager admits that she has yet to turn the page in her life when it comes to cervical cancer screenings.
In fact, she’s become so worried about how effective current tests are at catching cancer, she’s spent the last two years campaigning to change them.
‘I would be dead if I’d have had my test even a few weeks later,’ Katie tells Metro.co.uk. ‘All before reaching my 30th birthday, just after meeting the love of my life and preparing to start a family.’
At the time she had her smear, she explains, the UK was on the cusp on a nationwide change to cervical cancer screenings.
One that happened almost silently, as so few people with cervixes are aware of the shake up.
Until two and a half years ago, smears involved a cytology test, which would look for cell changes in the cervix. However, now, smears rely on a human papillomavirus (HPV) test to identify if any further investigations are needed, with cytology analysis only taking place if a person shows as HPV-positive.
If they’re found to be HPV-negative, no further investigations occur – even if that person has a history of abnormal cells.
Key terms to know
- HPV (human papillomavirus): A collection of common viruses spread through sexual contact that eight in 10 people get in their lifetime. Most don’t cause problems, but some can lead to cancer.
- HPV testing: This is the standard testing method used since late 2019. If a person is negative for HPV, no further investigations take place. If they are positive, they have a cytology test.
- Cytology: This is how cervical cancer screenings used to be tested before late 2019. It looks for abnormal cells, not HPV.
- Co-testing: When both HPV and cytology are used. Two years ago, there was an unsuccessful campaign for this in the UK, and some experts believe this would make the screening process safer for people with cervixes. It is more costly.
- Precancer cells: Abnormal cells detected in the cervix that are often, but not always, caused by HPV.
However, Katie didn’t have HPV – and her cancer was only found using cytology. Had she been tested after the change in screenings occurred, it could have been missed.
This is why she can’t let the issue go.
‘The tumour was picked up on the cytology slides in the smear test, where they check for abnormal cells,’ Katie explains.
‘I get so annoyed when people say cytology can’t diagnose cervical cancer because that’s the only thing that diagnosed me,’ she says, adding that her tumour had been missed even when she had two biopsies.
While cytology isn’t perfect, under the new rules as a HPV-negative person, her life – as a 24-year-old back then – would have been hanging in the balance.
‘I’ve got friends that had cervical cancer that were HPV-negative like me,’ she explains. ‘I may have had HPV years before and it was dormant or undetectable by the time I had my smear – it’s something I’ll never know.’
Jo’s Cervical Cancer Trust says that once HPV goes (in most cases, the body clears it naturally as there isn’t a cure), the risk of abnormal cells progressing is rare – but that window of opportunity, even just cracked open, is still there.
This knowledge led to Katie setting up a petition in 2020 calling for co-testing that was signed by 13,000 people.
Deeply concerned about the new screening system and the fear it will cost lives, she recalls: ‘I lived and breathed that petition for months because I wanted everyone to sign it. I infiltrated Facebook groups, didn’t sleep, and tried to make people understand.
However, her efforts were unsuccessful.
‘The government’s response was disheartening,’ says Katie, recalling part of their response stated:
If the woman tested does not have any evidence of hrHPV infection her chances of developing a cancer within five years are very small… We acknowledge however that screening is not perfect and will not detect all cases.
Though statistically ‘very small’, Katie is living proof of the human life this converts to.
She isn’t the only one with concerns, either. On Facebook, there is a community largely of women who have a concoction of HPV, precancer cells, and cervical cancer. Online, these strangers share their panic and swap smear test stories. Katie has been monitoring them for years, as the advice there isn’t regulated.
‘There’s a section who had abnormal cells in the past but now can’t get the cytology test because they’re HPV-negative – and they are terrified because their GPs don’t know what else they can do,’ she explains.
People either don’t understand the rules that have happened to cervical cancer screenings, or they don’t have a clue they’ve even happened at all
The only way to now access cytology testing without a positive HPV result is through private healthcare companies – something that isn’t financially accessible to many people.
‘People either don’t understand the rules that have happened to cervical cancer screenings, or they don’t have a clue they’ve even happened at all,’ says Katie.
‘There is so much confusion. Often women are posting pictures of their diagnosis letters on Facebook support groups asking people to make sense of it because their medical professionals didn’t explain it properly.’
Katie herself even had to fight for cytology tests after going into remission following the screening changes.
Her routine check ups to ensure the cancer was at bay only included HPV tests (which she continued to test negative for), despite being a trachelectomy patient, meaning her cervix has been surgically removed due to cancer.
After writing to the medical board in charge of her treatment repeatedly, Katie finally got the care she needed.
This part of her story goes to show the reluctance of public health bodies to use cytology testing.
It doesn’t help that statistics surrounding the problem differ. Most resources say that 99.7% of cervical cancers are caused by HPV, but a journal in the BMJ and experts at The Eve Appeal says it’s actually 95%.
While it’s clear HPV is the overwhelming cause of the disease, there’s a big difference between 0.3% and 5% when looking at those who develop cancer without detectable HPV.
Depending on who you ask, the statistics around the effectiveness of HPV testing vary too.
Nick Dudding, a retired Advanced Biomedical Scientist for the NHS specialising in cervical health, began to speak out when plans for HPV testing were first shared in the medical space years before they came to fruition, arguing data suggests patient safety might be at risk – his reservations were largely ignored.
He witnessed what he calls a ‘complete reluctance to consider other possibilities’.
‘What was really disappointing was, myself and some colleagues, we were advocating for co-screening for women entering the programme at 25,’ says Nick.
‘The extra cost of that would have been absolutely minimal, as a substantial part of the cost is on taking, transporting and storing the sample in a lab.
‘It would be super safe, and it would have been a better system than anywhere else in the world.’
Nick is also concerned by false-negative HPV tests, which occur when someone shows as negative for HPV but does in fact have it.
‘A not insignificant proportion of women could test negative for HPV and have an abnormality – that means they could subsequently develop cancer.
‘That’s the message I was trying to get out there and failing,’ he says.
This was a similar roadblock faced by Katie – and while a complex subject to get everyone’s head around, until that’s achieved, there are concerns that the public will be none the wiser to the problems in testing.
Nick remembers, before retirement, seeing data from the National Cancer Audit that showed a number of women who tested negative for HPV were found to have cancer through cytology testing.
If you get any symptoms, please go to your doctor – even if you have a negative HPV test
Speaking on the report, he says: ‘Because we were moving to HPV screening, in my opinion, this data should now be out and available in the public domain, but I have not seen it yet and for many years these reports were being published routinely.’
Clearly frustrated by the situation, he adds: ‘If cytology isn’t perfect and HPV isn’t perfect, why can’t we test for both at 25?
‘Although, even if they even were to do more cytology screenings, they’d need to train more staff up because many of the labs dedicated to this were shut down in 2019.’
Since the shift to HPV testing, the cytology workload is estimated to have dropped from 3.5million samples per year to just 350,000 to 500,000.
‘If you get any symptoms, please go to your doctor – even if you have a negative HPV test,’ Nick stresses. ‘We need nurses and doctors to know the test for HPV is not perfect so they take people seriously when they test negative but have cancer symptoms.’
Given all its flaws – so poignant that the new system could even go so far as to miss cancer diagnosis at its worst case scenario – it’s a wonder the change happened in the first place.
Although no experts believe cytology when performed alone is superior (in fact, even Nick believes HPV testing is slightly better in this respect), nor are against HPV testing as a whole – the nuance is in whether it’s sufficient on its own.
Dr Aziza Sesay, a NHS GP who works with Jo’s Cervical Cancer Trust, says she ‘understands the concerns’ of those in opposition, though ultimately believes the changes to screening are rooted in science.
‘Primary HPV testing is suggested to provide 60-70% greater protection against cervical cancer compared to cytology testing according to European trials,’ she says.
‘It is also said that HPV testing is more sensitive to high-grade cell changes.’
The switch from cytology to HPV is estimated to save £13million in healthcare costs, making it both ‘life-saving and cost saving’.
We have to be realistic about how co-testing could in fact be implemented logistically, accurately, and financially within the UK
Money has certainly played a factor in the current provisions. HPV testing reduces the number of referrals for treatment to examine and remove precancer cells.
Already this is evident – a freedom of information request Metro.co.uk made to NHS England shows that in 2017-18, 18,487 people had a procedure called LLETZ to remove such cells.
In 2020-21, this dropped to 17,159 people – but is this a good or a bad marker of how effective the new system is? Those in favour would say yes, as fewer people are going through procedures, but those against might argue a reduction in patient numbers is worrying, as there’s potential for neglected precancer cells to advance to cancer.
The question is, will these small cost-saving measures lead to larger costs later down the line for cancer treatment?
‘We have to be realistic about how co-testing could in fact be implemented logistically, accurately, and financially within the UK,’ explains Aziza.
‘Would we be using this approach for the whole population group or would we choose a select group? Could it lead to more testing, more patient anxiety, more referrals?’
What needs to be asked in the face of such fierce concern, she adds, is what if it is just a lot of, well, what ifs?
What we need to consider, Aziza explains, is ‘in the long term, could co-testing actually lead to more benefit than harm?’
Marshall Austin, a professor of pathology at the University of Pittsburgh who has researched cytology versus HPV testing extensively, disagrees.
His papers have found co-testing improves the rates of cervical cancer detection, especially in women aged 30 and older, and one study found of a group of cancer patients, cytology caught 85.1% of them, while HPV found just 77.5%.
Marshall’s statistics conflict with the UK’s study – called the ARTISTIC trial – which has been quoted numerous times to justify the switch to HPV testing.
Controversy surrounding cervical screenings
From age limits to waiting times, there have been several issues surrounding how we test for cervical cancer over the years that have prompted serious questions:
Amber Cliff passed away in 2017 as a result of cervical cancer that had spread.
She repeatedly asked her GP for an early smear test at 22 and was denied. After going private, she learned she had stage 2 cancer.
Amber’s Law is a charity that works to educate people with a cervix on the signs of cancer.
In 2020, the Irish Supreme Court upheld a win for Irene Teap, whose cervical cancer was missed.
She had been told her smear test was clear, but later learned she had terminal cancer.
According to Nick Dudding litigation cases in this area are rife due to failed cytology: ‘there are hundreds,’ he says.
Screening times extend to five years
Currently in England the time between screenings is three years – but that might change, as the case for switching to HPV testing was partly done to justify longer gaps between screenings.
At the start of 2022, five-year gaps were introduced in Wales and people were fearful about what this might mean for their health.
In May 2022, King’s College London published a study asserting that screening at five years finds as many cancers as does screening at three years.
However, Marshall Austin wrote in one of his papers about screening extensions: ‘We estimated that the proposed 5-yearly HPV screening policy may increase the overall incidence of cervical cancer by 47% in the population 30 to 69 years of age and without hysterectomy.’
Vaccine success – but not for all
The HPV vaccine, introduced in 2007, has been a huge success – but only for young girls.
Most women over the age of 28 aren’t vaccinated and neither are most boys over 16, as they were later added to the programme after men campaigned for their inclusion.
While the vaccine reduces the risk of developing HPV-derived cancer, it’s not a failsafe and doesn’t protect against all strains of HPV.
However, this trial included women aged 20-24 – an age group that isn’t entitled to a smear test in the UK.
Marshall believes this swings the results in favour of HPV testing, explaining: ‘These studies are skewed toward detection of precancer rather than invasive cancer.
‘Younger women aged 20-24 have more “fake” precancers, that will never progress to cervical cancer.
‘Virtually all clinical trials have been too small to have enough cervical cancers to make statistically valid conclusions about protection.’
Including young women is a way for researchers justify UK decision making, he believes, making HPV testing look like the winning option.
‘All studies showing protection from invasive cervical cancer by cervical screening are long-term observational studies based on cytology screening,’ Marshall adds. ‘No such similar data exists yet with HPV screening.’
As cervical cancer takes, on average, around a decade to develop, the fear is that when the UK hits the 10 year mark of its HPV testing programme, there might be a cluster of patients that fell through the gaps.
Which means, unfortunately, all we can do is watch and wait.
You, me & HPV
This week, Metro.co.uk is looking at HPV and its related cancers from a range of perspectives.
By and large HPV isn’t something to worry about – but it is something to be aware of.
HPV is something that eight in 10 of us will encounter at some stage of our lives. It’s spread through skin-to-skin contact, not just penetrative sex. There is even some evidence to suggest it can spread through deep kissing.
It isn’t tested for in a standard sexual health screening, so it’s near impossible to know when or where a person might have contracted it or who they might have passed it onto.
For most people, their bodies will fight the virus off in around one to two years without any lasting effects. For some people however, it can make them more vulnerable to cancers of the cervix, anus, head and neck, penis, vagina and vulva.
Over this week, we’ll be exploring the human issues that come with HPV and its related cancers.
For more health information, please visit Jo’s Cervical Cancer Trust, The Eve Appeal, the No Man campaign and The Anal Cancer Foundation.
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