Written by Sam Wonfor

Health

A very good smear campaign

As new research reveals women over 50 are at higher risk of late diagnosis with cervical cancer through lack of knowledge and an associated decrease in regular smears, Sam Wonfor talks to a woman who wishes she could turn back the clock.

Amanda Alcock

Amanda Alcock was diagnosed with cervical cancer aged 51.

This week is Cervical Screening Awareness Week. A week where women are reminded that a five-minute appointment at the GP surgery every few years could save your life.

Could we all think of something else we’d rather be doing when our feet are in stirrups and we’re trying to have a breezy conversation while a stranger uses one of Inspector Gadget’s cotton buds to see how our cervix is doing?

I’m going to go out on a limb and speak for everyone when I say: Yes, yes we could.

But every day, eight women are diagnosed with cervical cancer and three women will die from it, so I’m going to continue speaking for us all when I say a smear test is one of the biggies you should never put off.

This week the charity Jo’s Cervical Cancer Trust is particularly looking to push this message among older women (aged 50–64), who, as a group, are not attending as many cervical screening appointments as they should.

New research is pointing towards a lack of knowledge about the cause of cervical cancer – and who can be affected – as a contributing factor.

Almost two thirds of women in this age group do not know HPV causes cervical cancer, and many fail to link historic sexual activity as a threat to the virus lying dormant and developing into cervical cancer.

Alongside knowledge gaps, the study also revealed 29.1 per cent of women over 50 have found the test painful since growing older. There is concern that if attendance for cervical screening continues to decline among older women, more will face a later stage diagnosis of cervical cancer, putting them at a much higher risk of losing their lives to the disease.

It’s a concern shared by 54-year-old mother-of-three Amanda Alcock, who found out she had cervical cancer eight years after her last smear.

Amanda’s story

“I was diagnosed on 22 November 2011 when I was 51.

It had been eight years since my last smear. I’m a nurse, so I should have known better.

Mums always put themselves last, though – we lead busy lives, don’t we? It’s an easy thing to put off and the years went by. I’d always been very good at going regularly when I was younger.

I never thought anything would happen to me.

It was only because I had symptoms that I went to see the doctor. I’d had a bleed in between periods and after intercourse. I could also feel my uterus twitching a little bit. I knew something wasn’t right.

“You try not to think about dying, but of course you do. I could see the cemetery from my bedroom. I used to sit up there thinking, ‘You’re not having me now.’”

They booked me in for a smear and then to talk to someone about the menopause. But it was when she was doing the smear that the nurse said she was just going to go and get the doctor. I thought, ‘Here we go.’

They gave me a biopsy and diagnosed me with a rare form of cervical cancer. They said I was at stage 1B and that I had a tumour of about 4cm on my cervix.

I had a radical hysterectomy and then about four weeks post-op, I started chemotherapy. I had that every three weeks for about six months. It was torture. I don’t know how I survived that. It knocked me for 10.

Amanda Alcock

Amanda underwent several months of gruelling treatment.

My hair fell out within two weeks. That was very traumatic for me. My husband shaved it and says it’s one of the worst things he’s ever had to do in his life. I feel guilty about asking him to do that.

I couldn’t work, so there were financial pressures too.

My little boy was only 11 when I was diagnosed. He’d just started secondary school. My eldest son was 26 and my daughter was 22.

You try not to think about dying, but of course you do. I could see the cemetery from my bedroom window. I used to sit up there thinking, ‘You’re not having me now.’

We had been lucky enough to get tickets for the Olympic Games for the swimming – my youngest son is a swimmer. My oncologist said he didn’t think we’d get there because I’d still be having treatment.

After the chemotherapy I had 25 radiotherapy sessions – one every day. The last three were internal. That was very painful.

I finished my treatment on 10 July 2012… and then you start trying to get your life back together, but it takes years.

I do feel guilty about it. You feel the responsibility not only for yourself but for your family. For the sake of five minutes out of your life… but we always put ourselves last, don’t we?

If I could turn that clock back, of course I would have regular smears.

Having cancer is life-changing and it affects everything and everybody in your life.

You have to learn to know your body again. You’ve got to learn to live again.

“Mums always put themselves last, though – we lead busy lives, don’t we? It’s an easy thing to put off and the years went by.”

It affects every emotion you go through. Your confidence suffers. It’s really ongoing. My toes are still numb and I’ve got tinnitus from the chemo, so there are always reminders of what you’ve been through. But you have to try and focus on the fact you’re here and life’s good. You’re alive.

I’m coming up to my check-up, which always makes me nervous, but so far, so good. Every milestone you reach, your prognosis gets better.

I’ve been sitting out in the sunshine today listening to the birds singing.

And we all went to the Olympics. I was bald as a coot, but we all went. I finished my treatment on 10 July and we went two weeks after. I remember being very tired, but that was a good day.”

• Every day in the UK eight women daily are diagnosed with cervical cancer and three women lose their lives to the disease.

• More than 300,000 women a year are told they may have a cervical abnormality that could require treatment.

• Anyone who has ever been sexually active is at risk of contracting HPV.

• Around 13 high-risk types of HPV are responsible for causing cervical cancers.

• In the UK, cervical screening is offered every three years to women between 25 and 49; and every five years to women between the ages of 50 and 64.

• If older women are not attending screening when eligible, their risk of developing cervical cancer after 65 increases dramatically.

• In 2014 more than a third of diagnoses were in women over 50 and those aged 50–64 are more likely to be diagnosed with advanced stage cervical cancer, with 49 per cent as stage two or later.

 

Jo’s Cervical Cancer Trust is campaigning to find more ways to increase the number of smears attended by older women and is calling for more research into exploring a HPV self-sampling test, after 53.9 per cent of those who had delayed a cervical screening test said they would prefer to self-sample at home.

A self-sampling kit would be designed for women to use themselves in the privacy of their own home, or if they so wish, at a medical centre. The kit would test for the presence of high-risk HPV types that could cause cervical cancer.

Robert Music, chief executive of Jo’s Cervical Cancer Trust says: “It’s absolutely vital that women of all ages are educated around the cause of cervical cancer and their risk of HPV. Responses from women questioned in our research were worrying, with some citing they had been ‘celibate’ for several years and therefore did not consider themselves to be at risk. We must remind all women that HPV is very common and can lie dormant for very long periods of time and that the best way of reducing one’s risk of cervical cancer is to attend screening promptly while eligible.”

Jo's Cervical Cancer Trust logoDr Susan Sherman, senior lecturer in Psychology at Keele University says: “Despite all the attention on younger women – in part due to the Jade Goody effect – 20 per cent of new diagnoses and nearly 50 per cent of cervical cancer deaths occur in women over the age of 64. We need to change the perception of cervical cancer so it is thought of just like breast and bowel cancer – that it can affect women well into old age.”

For more information on the research and the work of Jo’s Cervical Cancer Trust, visit www.jostrust.org.uk.

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Written by Sam Wonfor

Journalist and mother-of-two who gets lightbulb invention moments while breastfeeding. Well, she had one. Loves dogs and the thought of exercise. Currently receiving treatment for a deep addiction to Malteaster Bunnies.@samwonfor