Cervical cancer: Women share concerns over the number of years between smear tests increasing

ITV Wales Correspondent Carole Green meets a cervical cancer survivor in Connor's Quay

Women have shared their concerns over the number of years between tests for cervical cancer increasing in Wales.

The change means women and people with a cervix under 50 who do not have Human papillomavirus (HPV) cells found at a screening will now wait five years until another test, rather than three.

The announcement followed an apology by Public Health Wales for the "lack of clarity" over why the change was taking place and more than a million people have signed a petition against the move.

Every year, around 220,000 people across the UK are diagnosed with cell changes following a smear test, yet new research shows a quarter reported feeling ashamed following their diagnosis of cell changes and more than half said they knew nothing about what cell changes meant, prior to their diagnosis.

For Zoe Brown, a smear test led to the devastating news she had cancer. She says it was a confusing and stressful time as she didn't know anything about HPV or different types of associated cancers.

The 29-year-old mum, from Connor's Quay in Flintshire, said: "You hear the word cancer every day and you know people that might have it, you see it on the news and you see it being advertised and the charities involved... but when you're told you have it, it's like hearing it for the first time. It's like you've never heard the word before."

Taking her routine smear test meant the cancer was caught at an early stage and could be treated.

Zoe told ITV Wales: "(The doctor) said to me if I hadn't have gone for that smear and I'd waited another three years, 'we'd be having a very different conversation' and to know that that one smear could have potentially saved my life is huge.

"That's why it's so important to just ring and book that appointment in. It's given me the opportunity to have options further down the line in life and my future to have another child. I'm very, very lucky."

Health officials have said the length of time between tests is being extended because of the success of more effective HPV testing.

Zoe says she "completely understands" the research that's gone behind it and "it's amazing what we've done now with HPV and the vaccine" but added that there's not enough information out there to fully understand why it's been changed.

"I sat every night looking for the answers to questions that I was asking and I would only find those answers based on other people's experiences.

"That's not enough, we need a little bit more information and more guidance as to why we're changing it from three to five years."

The facts about cervical screening (smear tests)

• Cervical screening can stop cervical cancer before it even starts. It's a really important test but not always easy.

• It helps identify those who may be at greater risk of cervical cancer and offer treatment or monitor more closely from an early stage

• It saves thousands of lives a year, or around 7 in 10 cases of cervical cancer

• Like any test it is not 100% effective and does not stop every case of cervical cancer

• Across the UK, almost 1 in 3 do not attend when invited and this is as high as 1 in 2 in places such as London

• Barriers to attendance include: Getting an appointment, culture or language, previous trauma including sexual violence, being post-menopausal, physical disability, learning disability, embarrassment, fear, not understanding what the test is for.

New research by Jo's Cervical Cancer Trust shows thousands of women in the UK know little or nothing about cervical cell changes prior to being diagnosed with high numbers feeling ashamed.

Around 220,000 women across the UK are diagnosed with cell changes every year following cervical screening, however over a quarter (26%) of the 1,086 surveyed said they felt ashamed when diagnosed. This was particularly pronounced in younger age groups (40% of 25-29 year olds: 8% of 60-64s).

Presenter and podcaster Jess Davies had her first smear test in 2016, which came back positive for HPV and abnormal cells.

She said: "I had no idea what all of this meant, I was still quite new to it, I don't think it's something people really discuss. I didn't even know I was being checked for HPV and I was so worried about it. Because none of my friends around me received a similar letter - I felt like the only one.

"I Googled it and found the worst possible answers to my questions. It was just a scary time. I remember My mum was crying, thinking I had cancer."

Luckily, by the time Jess had her follow up hospital appointment, the HPV had cleared up by itself.

"Since then I've been sharing why it's so important that we go to our smear tests," she added. "But also so we have open conversations around it so people don't feel so lonely and so lost."

The facts about cervical cell changes (abnormal cells)

• 220,000 women and people with a cervix are told they have cervical cell changes (abnormal cells) every year with many having treatment

• This is not cancer, but could go onto become cancer if not treated or monitored

• Cell changes can be high-grade or low-grade, this refers to the amount of cells which have changed

• Some cell changes can go back to normal by themselves but we have no way of knowing which of them will or will not get worse - this is why treatment is usually offered to those with high-grade cell changes

• The most common treatment is called LLETZ. It's a very effective treatment which uses a thin wire electrical loop to remove the area of the cervix where there are cell changes

• The most common side effects after treatment for cell changes are pain, bleeding and changes to vaginal discharge

Human Papillomavirus (HPV) causes cell changes. Cervical screening can help prevent cervical cancer by identifying any infection and cells which have changed (become abnormal). The cells can be monitored or treated to stop cancer developing.

Over 70% (786) recalled having a HPV diagnosis. For many this made the experience of cell changes far harder. High numbers expressed feelings of guilt, confusion, and anger or concerns about relationships and infidelity as a result. A third (34%) of these said it made them anxious or worried and 35% spoke of shame, embarrassment or feeling dirty.

Jo's Cervical Cancer Trust says this reflects what it hears through its services, where calls about the virus make up 50% of those to the Helpline. In its new report, the charity is calling for far greater education and conversation about HPV to reduce the impact a diagnosis can bring.

Samantha Dixon, Chief Executive, Jo's Cervical Cancer Trust: "It should not be the case that shame is connected to cervical screening results in 2022.

"HPV stigma is something that needs to be tackled and it's up to all of us to remove the stigma attached to having a diagnosis. Far more needs to be done to ensure everyone attending screening is fully prepared for different results and has the information they need to deal with them, because cervical cancer prevention doesn't stop at cervical screening."

A fifth (21%) said they felt isolated following their diagnosis, with many not wanting to tell others. The charity warns the pandemic is exacerbating this, with many attending appointments by themselves. Feelings of isolation doubled during the pandemic (29% diagnosed in the pandemic reported feeling isolated, compared to 15% before).

The charity is urging women and people with a cervix to book an appointment if they are overdue, while calling for greater action to increase understanding and reduce anxieties of potential results.

Samantha continues: "Cervical screening can help stop cervical cancer before it starts so we cannot afford to let attendance continue to fall in such worrying numbers. Please remember the NHS is well and truly open, so if you are overdue screening or have a colposcopy appointment we urge you not to put it off. If you have questions or need support, then do contact our Helpline on 0808 802 8000."

Jo's Cervical Cancer Trust are using their campaign week, Cervical Cancer Prevention Week (17-23rd January 2022) to raise awareness of cervical screening, encourage attendance and increase understanding about potential results.