Why do GPs fail to spot bowel cancer in young people like Stephen – until too late? (From the Daily Mail)
- Stephen Sutton died after a four-year battle with bowel cancer
- 19-year-old raised millions for the Teenage Cancer Trust before his death
- Number of under-50s diagnosed is gradually rising to around 2,100 a year
Hayley Hovey was 23 weeks’ pregnant with her first baby when she suddenly woke in the middle of the night with a sharp, shooting pain in her side.
She visited her GP’s out-of-hours service but was reassured to hear her baby’s heartbeat and be told all was well. The pain was probably ‘ligament strain’ caused by the weight of the growing baby. ‘I was ecstatic to be having a baby – I’ve always wanted to be a mum,’ says Hayley, 34. ‘All my scans showed my baby was healthy, so I didn’t think anything more about that pain.’
She now knows it was the first sign there was a grave threat to her baby’s life, and her own. Four weeks later her daughter, Autumn, was born prematurely and later died. Then Hayley was found to have bowel cancer.
Doctors now think Autumn’s death was linked to her mother’s cancer, with a blood clot breaking away from the tumour, damaging Hayley’s placenta and cutting off the food supply to her unborn baby.
However, it took four months after Autumn’s death for Hayley to be diagnosed. The problem was her age – she was ‘too young’ for bowel cancer to be considered.
Hayley, who lives in Fareham, Hants, with her husband Paul, a 35-year-old IT consultant, says: ‘Looking back, I had textbook symptoms – exhaustion, intermittent stomach pains, increasingly bad diarrhoea, blood in my stools and bleeding.
The disease is Britain’s second-biggest cancer killer, claiming 16,000 lives a year. The number of under-50s diagnosed has been gradually rising – to around 2,100 a year.
But a recent survey by the charity Bowel Cancer UK of patients under 50 found that 42 per cent of the women had visited their GP at least five times before being referred for tests.
Indeed, Hayley, a supply planner for an IT firm, was examined five times by different doctors and midwives, who all missed her symptoms, despite a golf ball-sized lump appearing on her stomach after her pregnancy. By the time she was diagnosed, Hayley had stage three to four cancer, meaning the tumour had broken through her bowel wall.
She had to undergo a seven-hour operation to remove the 6cm growth, followed by six months of chemo and radiotherapy.
But her experience is not uncommon, says Deborah Alsina, chief executive of Bowel Cancer UK: ‘We hear from many younger people who express frustration at not getting a diagnosis and support.’
‘Bowel cancer is often associated with older patients over 50 – but younger people can, and do, regularly get it, as the tragic story of Stephen Sutton recently highlighted,’ adds Kevin Monahan, consultant gastroenterologist at West Middlesex University Hospital, London.
Stephen Sutton, 19, raised more than £3million during his three-year battle against multiple tumours
Stephen Sutton, the 19-year-old fundraiser who died last week from the disease, told the Mail earlier this month of his anger that he was not diagnosed for six months after his symptoms started. This was despite his family history of Lynch syndrome, a genetic condition that raises the risk of bowel cancer.
‘If it had been caught earlier, it could have led to a better prognosis,’ he said. Hayley, too, eventually discovered she had Lynch syndrome.
Bowel cancer is very treatable if detected early – 93 per cent of patients who are found to have a small tumour on the bowel wall live for five years or more. Yet only 9 per cent of cases are diagnosed at this stage – most are diagnosed at stage three. So, the overall five-year survival rate for bowel-cancer patients is just 54 per cent.
Because patients and many doctors assume that young people won’t get bowel cancer, they are particularly likely to have advanced-stage tumours at the time of diagnosis.
What to watch for
Bleeding or blood in faeces
A change in bowel habits lasting more than three weeks
Unexplained weight loss
See bowelcanceruk.org.uk; beatingbowelcancer.org (phone 08450 719 301); and familyhistorybowelcancer.wordpress.com/
Cancer charities are campaigning to improve diagnosis for all ages – they want new diagnostic guidelines for GPs and earlier screening procedures.
Sean Duffy, NHS England’s national clinical director for cancer, says: ‘The UK lags behind much of Europe in terms of survival from bowel cancer. We need to change this, and this includes identifying it better in patients under 50.’
National GP guidelines state only patients aged 60 and over should be automatically referred to hospital for tests if they have one symptom. Patients aged 40 to 60 must exhibit two or more symptoms.
For under 40s, there is often an assumption the symptoms must be something else, says Mark Flannagan, chief executive of the charity Beating Bowel Cancer. ‘We’ve had patients with red-flag symptoms – such as blood in their stools – being told “you’ve got IBS” or “you’re too young to have cancer” by their GPs.’
Four weeks after Hayley’s initial scare, she was unable to feel her baby moving. Tests revealed Autumn had stopped growing, and she had to be delivered by emergency caesarean. After her birth, in July 2011, she was taken to a specialist neo-natal unit at Southampton General Hospital but died in hospital a few weeks later.
Two weeks afterwards, Hayley experienced more shooting pains. With her pregnancy bump gone, there was also a noticeable lump on the side of her waist. Her midwife said it was probably an infection, and Hayley was given antibiotics.
But her health deteriorated rapidly and she had to take six weeks off work with exhaustion, which her GP put down to depression.
Within three months of Autumn’s death, Hayley was suffering from nausea and abdominal pain.
Unable to get a GP’s appointment, she went to A&E but was told the lump was possibly an infection related to her caesarean. Doctors performed a cervical smear test (which was subsequently lost) and sent her home with paracetamol.
Stephen Sutton with his mother Jane whilst Prime Minister David Cameron visited him
‘I got the impression they didn’t take me very seriously,’ she recalls.
Soon after, she was vomiting up to ten times a day, feeling dizzy and weak, passing blood and experiencing chronic diarrhoea. At an emergency GP appointment, she was examined by a different doctor who immediately referred her to hospital; after several days of tests, she was diagnosed with cancer.
Four days before Christmas, Hayley underwent surgery. ‘We thought we’d be enjoying our first Christmas as a family, but instead I was in hospital, grieving for the loss of our little girl and terrified about the future,’ she recalls. ‘My treatment might have been less of an ordeal if my cancer had been picked up sooner. It makes me quite angry to think if I’d been 60, it would have been picked up more quickly.’
But even obvious symptoms are often missed by doctors, says Mr Flannagan. ‘I am not blaming GPs, but we need to not be shy of pointing out where things are going wrong. The default position should be for a GP to rule out cancer, just to be safe.’
‘It can also be problematic if patients don’t have obvious symptoms such as bleeding’, says Dr Monahan. ‘They may instead have vaguer symptoms such as tiredness, unexplained weight loss or abdominal pain, which could be attributed to being symptoms of other conditions such as irritable bowel syndrome or Crohn’s disease.’
Public awareness is also an issue. A survey in March by health insurer AXA PPP found nearly half of men couldn’t name one symptom of bowel cancer.
Indeed, Martin Vickers, 49, had never heard of it before his diagnosis in 2008. ‘I was totally shocked,’ says the father of four, who lives in Burton-on-Trent with wife Andrea, 48. ‘I didn’t know bowel cancer existed. It was hugely traumatic.’
Martin visited his GP five times in nine months with extreme tiredness and loose stools. His symptoms were attributed to stress – his mother had recently died and he has a high-pressure job as head of capital investment for Cambridge and South Staffordshire Water – and then IBS.
Joining friends and family to complete a Guinness Book of Records challenge creating hearts with hands
‘But I knew something wasn’t right,’ says Martin. ‘It was instinctive.’ He was finally diagnosed with stage three bowel cancer in November 2008, after his GP did an internal examination and felt a lump.
Martin underwent three months of chemotherapy and radiotherapy, followed by surgery, another six months of chemotherapy and a second operation. He now has to use a colostomy bag but has been in remission for five years.
Currently, screening is only available to people aged 60-plus. They are sent home tests, which involve sending a stool sample to a lab. But the Department of Health is now looking at a new procedure, bowel scope screening, which involves a partial colonoscopy -examining only the lower bowel.
A major UK trial of 55 to 64 year olds showed that people screened this way were 43 per cent less likely to die from bowel cancer, and 33 per cent less likely to develop it.
This is because the procedure is usually successful at detecting small growths known as polyps, which can become cancerous.
The screening – which would be offered to everyone aged 55 and over – is now being piloted. Campaigners hope it will be made available nationally by 2016.
‘This is a really important development and should make a big difference to bowel cancer outcomes,’ says Dr Monahan, who runs the Family History of Bowel Cancer clinic at West Middlesex University Hospital, specialising in hereditary components of the disease.
It won’t, however, help younger patients such as Hayley. Before her chemotherapy, she and Paul had nine embryos frozen via IVF. However she is worried she may pass on Lynch syndrome, so the couple are considering what to do.
But she says: ‘I am still here, I have a life ahead of me – and I hope my story will help others to be diagnosed in time.’