Twice Katie asked for a smear test, but was told she was 'too young' to need one. Now 24, she is dying from cervical cancer, one of many young women who have fallen victim to a scandalous change in health policy.

One year ago Katie Hilliard was a typical 20-something - working in the City, going out with friends from university and generally just having fun.

But the 24-year-old now has cervical cancer and despite a hysterectomy, chemotherapy and radiotherapy, the disease has spread to her lymph nodes and lungs. Doctors have given Katie at best two years; at worst 11 months.

'They have not been very positive about the future,' she says simply.
Kate

Katie Hilliard, 24, is terminally ill with cervical cancer after being denied a smear test 'because she was too young'

What makes her story even more tragic is that cervical cancer, if detected early, is a preventable disease.

In fact, Katie had actually requested a smear test - used to detect the pre-cancerous cell changes linked to the disease - twice in the four years before her diagnosis.

Yet each time she was refused, because she was 'too young'.

Too young to be eligible for a smear test, though not too young to contract cervical cancer.

She says: 'If I'd had a smear test when I was 21, all of this could have been avoided.'

Instead, Katie is now undergoing more chemotherapy and is desperately researching alternative ways of fighting the cancer.

She is in a lot of pain and has trouble walking. 'I feel old before my time, but I want to live. I'm not going to give up,' she says.

'I wanted to have children and buy a house, but getting a mortgage is now impossible,' says the insurance broker from Haywards Heath, West Sussex.

She and her fiance still plan to marry this October, and she has had her eggs saved in the hope that she goes into remission.

'Some days I'm really hopeful, other days I don't know how I'm going to do this. This should never have happened. I am too young to be dealing with this.

'It is something that a simple smear test should have sorted out.'
Katie

Katie, before she was diagnosed with cancer last year

Like Katie, Claire Everett, 22, a married mother-of-one, is terminally ill with cervical cancer. She has no doubt that a smear test 'would have made all the difference'.

An otherwise healthy young woman, when she developed worrying symptoms (an unusual discharge) last year she immediately went to the doctor; the cancer was diagnosed and initially chemotherapy and radiation were thought to have been successful.

Yet last summer, two months after the treatment finished, Claire was told the disease had spread through her pelvis and the cancer was now incurable.

'My mum was crying her eyes out,' she recalls. 'She asked if the cancer was terminal and I walked out of the room. Sometimes I think that if I ignore bad news, it's not happening.

'My initial thought was not for me, but for Alex, my little boy, who's two. The thought that I might not see him grow up broke my heart.'

Both Katie and Claire had fallen foul of a recent change in government health policy.

Until a few years ago, all women in the UK were offered regular screening for cervical cancer from the age of 20; then in 2004 the screening age in England was raised to 25 (it remains at 20 in Scotland and Wales).
Graphic

This was because the risk of cervical cancer in younger women was thought to be negligible.

But experts believe this change in policy means the condition could go undiagnosed while it is still highly treatable.

It was 'a very poor decision', says Professor John Shepherd, surgeon and gynaecological oncologist at The Royal Marsden Hospital in London.

'Approximately 10 per cent of patients diagnosed with invasive cervical cancer are women aged 30 or younger, and these numbers are likely to increase.'

This is because the disease is caused by the Human Papilloma virus (HPV), the most common sexually transmitted infection.

Up to 75 per cent of sexually active men and women will come into contact with the virus at some point in their lifetime although many will not realise this, as it does not cause symptoms.

Most cervical cancers take time to develop from pre-cancerous cells to full-blown cancer - the concern is that with British teenagers on average becoming sexually active at 16, some young women will have already developed serious cell changes or even early stage cancer by the time they are eligible for their first smear at 25.

Screening at 25 is far too late, says Professor Shepherd. He believes women should ideally have their first smear test as soon as they become sexually active and certainly no later than the age of 20.

This is in line with America, where screening begins at 20 or within three years of first sexual contact - whichever comes earlier.

In other countries, such as Australia, screening begins at 18.

'I think it is inappropriate in 2008 that the NHS screening programme in England does not acknowledge and thus protect young women who are sexually active before they reach the age of 25,' says Pamela Morton, director of the cervical cancer charity Jo's Trust. 'Frankly, it's disgraceful.'

What's so frustrating is that the health authorities are taking the risk of the disease seriously enough to introduce a controversial vaccination programme for 12 to 13-year-old girls in September.

As a result, thousands of young women who are too old for vaccination, yet too young for routine screening, will be left in medical limbo.

The fact is that once a woman is eligible for it, the NHS Screening Programme is hugely successful.

It prevents many cancers from developing and detects others at an early enough stage to save 4,500 lives annually.
Claire Walker

Claire Walker 22 , is terminally ill with cervical cancer and says a smear test 'would have made all the difference'

One of the arguments against earlier screening is that a high proportion of cell abnormalities in women under 25 will revert to normal without the need for treatment.

The diagnostic test and treatment for cell changes also carry a small risk of scarring or infection, which may affect a woman's ability to conceive or bear children.

'We know there is a lot of anxiety associated with an abnormal test,' says Professor David Luesley, adviser to the NHS Screening Programme.

'While we can prevail upon the medical community to be conservative with women under 25 to avoid unnecessary intervention, it is sometimes difficult to do that when you're faced with a very anxious young woman who has perhaps had more than one abnormal test.'

'The needs of the many outweigh the needs of the very few,' he adds. 'All screening is based on that same principle.

'If a screening test causes more harm to a population than good, it is not a good screening test. Screening tests apply to populations, not individuals.'

For the unfortunate women diagnosed with cervical cancer while still 'too young' to qualify for the smear test that might have protected them, this view is likely to provide scant consolation.

Katie Hilliard was 19 when she first asked for a smear test. 'All my friends were having them, so I thought I'd better book one, too, but I was told I didn't need one until I was 20.

'So the following year I went to my local clinic, only to be told the criteria had changed and I wasn't now due to be tested until I was 25.

'I even double-checked with my GP and they told me the same story.'

Then in March last year she developed a discharge she thought was probably thrush. 'It never occurred to me it could be something as bad as cancer.'

After an internal examination, Katie was referred to Guy's Hospital, London, where she had a biopsy two weeks later. A fortnight after that, she was called back for the results.

'I walked into the room and I could just tell by the look on their faces that it was bad news. They told me they'd found grade 3 cancer cells, which are the most aggressive.'

Last summer Katie had chemoradiation treatment, which is a five-week regime of daily radiotherapy c****ined with a weekly dose of chemotherapy.

This was followed by a hysterectomy, which left her devastated at the knowledge she could never bear her own children.
Claire

Claire, pictured with her son Alex before being diagnosed, says it breaks her heart that she might not be around to see him grow up

However, the pathology results from the hysterectomy showed no signs of cancer, so Katie thought she had the all-clear.

'I started to organise a celebration. But about three weeks later my leg started to ache.'

On January 2, the day she was supposed to return to work, a scan revealed that the cancer had spread and she now had tumours in her lymph nodes and her lungs.

The pain in her legs was caused by one of these tumours pressing on her nerves.

Caught early, the disease is treatable, but there is still a risk to a woman's fertility.

Rachel Bennett, a student of photography at the University of Derby, was diagnosed last December when she was 21.

'I was terrified-because it was all new to me,' she says.

'Before I was diagnosed, I didn't even really know where the cervix was. I'd never heard of HPV and had no idea how you got cervical cancer because I was too young for smear tests.'

Because the disease was caught at an early stage Rachel was eligible for a new fertility-saving surgery called trachelectomy in which only the cervix is removed rather than the whole w****.

'My biggest fear was losing the ability to have children, so I feel lucky, incredibly lucky,' she says.

'However, it is infuriating to know that if I'd had regular smear tests they could have caught the cancer before I would've needed my cervix removed.

'I now have an increased chance of miscarriage and premature birth and I'll have to have a Caesarean. I feel less of a woman because of it.'

Rachel is one of the 'fortunate' ones in that she has kept her fertility and has an excellent prognosis for survival.

But nobody walks away from cancer scot-free - a cancer diagnosis always leaves a legacy of fear in its wake.

'It's always going to be in the back of my mind: "Will the cancer come back? Will it spread?" ' says Rachel. 'It is something that is never going to stop worrying me.'

Quite what impact the decision to postpone the screening age to 25 has on cervical cancer rates won't be known until the figures become available around 2010.

But Professor Shepherd is clear: 'I appreciate that there is a health economics issue here - it will cost money to screen younger women - but I still think it should be a priority.

'Cervical cancer is a preventable disease and catching it early will save lives.'