UK Edition
What we’ve learnt about bowel cancer from the inspirational Deborah James
James has raised £4.3 million for research into the disease, which kills 45 people every day in the UK. Here are the symptoms to be aware of
“The message I never wanted to write” came last week: a devastating online post revealing that Deborah James, who has spent the past five years documenting life with stage four bowel cancer, is receiving hospice care at home. “My body isn’t playing ball… I’m not able to walk, I’m sleeping most of the days, and most things I took for granted are pipe dreams,” the 40-year-old wrote of ending active treatment; her only solace being that her search for a cure had “left no stone unturned”.
James, a mother of two, has in recent years become a public voice for a disease that kills 45 people in the UK every day. In her final post, she asked her online followers to donate the cost of a drink to her Bowelbabe Fund, to pay for future research; in just days, it has raised over £4.4m (at the time of writing) and she has been awarded a damehood.
Her influence has been such that last week, the subject of blood in stools – one of the telltale signs of the disease – was discussed on breakfast radio and daytime TV, and her legacy praised by the Duke and Duchess of Cambridge. James “has made it okay to say ‘check your poo, and if something’s not right, trust your gut’,” says Genevieve Edwards, CEO of Bowel Cancer UK.
Demystifying “a disease which some people find embarrassing” is vital for the one in 15 men and one in 18 women who are diagnosed each year. And squeamishness must no longer hamper what is a “potentially curable condition,” adds Justin Davies, a consultant colorectal surgeon at Addenbrooke’s Hospital, Cambridge – particularly if the mention of those less palatable signs stops potential sufferers from seeking help.
Late diagnosis is currently the biggest threat to survival rates of bowel cancer – the fourth most common in the UK – only 10 per cent of people with a stage four diagnosis will live beyond five years.
Part of the shock of the Deborah James story is that the typical profile for sufferers has been over-50s, who account for 94 per cent of those diagnosed. But that is changing, says Davies, who notes that an increasing number of patients – like breakfast DJ Adele Roberts, diagnosed last year at 42, and James, who was 35 when she learnt she had stage four – are developing the condition.
“We’re definitely seeing an increase in the number of patients who are presenting with bowel cancer at a young age… we don’t yet know why.” He says that knowing the symptoms, and checking them whatever age you are, is key.
Those symptoms include bleeding from the bottom or blood in stools, changes to bowel habits, unexpected weight loss, tiredness and lumps or pain in the stomach.
Bowel cancer is an overarching term relating to cancer anywhere within the large bowel (occurring between the colon and rectum). Treatment begins via a GP and screening tests, such as the FIT (faecal immunochemical test) in which a stool sample is sent for analysis. A colonoscopy will follow where required and, if surgery is necessary, part of the colon or rectum will be removed.
If caught early, surgery should suffice: radiotherapy, chemotherapy and immunotherapy are commonly used to treat patients in the later stages of the condition.
Rapid diagnosis is vital yet NHS and cancer care backlogs – which currently mean 30,000 people are waiting to begin treatment – are hampering efforts. GP Dr Chun Tang is working on the UK distribution of ColoAlert, a stool kit that can be bought online, which screens for three common bowel cancer biomarkers. It is one of just two tests globally (and the only one in Europe) to combine FIT’s capabilities with DNA markers in stools; studies show that it has a sensitivity rating of over 85 per cent and specificity of more than 92 per cent in detecting the disease, even if symptoms like bleeding are yet to occur.
Tang lost his father to late-diagnosed bowel cancer in 2007 – missed by private and NHS doctors. Routine testing (like FIT, which was introduced five years ago and is now sent to all 60-74-year-olds every two years) was not available then, but even now, with doctors “overloaded” and “too many opportunities for human error in a system that discourages over-referrals and over-prescribing,” the nettle on early intervention has not been grasped.
Early diagnosis can raise survival chances from five to 95 per cent; Tang wants ColoAlert to be freely available in the UK (tests can currently be ordered online for £375), and for the many in a similar position to his father’s to feel confident in accessing better, quicker care. The UK regularly finds itself below comparable countries’ bowel cancer survival rates; a major 2019 study published in The Lancet found that 70.8 per cent of people in Australia lived for at least five years post-diagnosis, compared with 58.9 per cent in the UK.
James wrote of her life being extended by experimental drugs and therapies that offer focused forms of intervention, including going under a CyberKnife, which offers targeted radiotherapy via electromagnetic energy to tumours. For those in the more advanced stages of the illness – around 10,000 of those diagnosed each year – a targeted therapy combining encorafenib and cetuximab has been found to extend life expectancy by around three months. Further immunotherapy drugs for advanced sufferers – nivolumab and ipilimumab, and pembrolizumab – were approved by the National Institute for Health and Care Excellence (NICE) last year; they use the body’s immune system to destroy the cancer.
Beyond medical treatment, there is evidence that lifestyle factors can affect the development of the condition, too. Smoking, alcohol consumption and being overweight or obese can raise bowel cancer risk, while remaining physically active, eating well and taking nonsteroidal anti-inflammatory drugs such as aspirin long-term can decrease the risk factor.
Ultimately, all treatment became ineffective for James, leading doctors to believe further medical intervention was “fruitless”. Still, her influence is irrefutable, Davies says. Last week alone, two patients mentioned her by name in his clinic, saying that they had only sought treatment due to her work. The staggering amount her donations continue to raise will provide funding for cutting edge research, but more seismic, he says, is that “if there’s an increased knowledge in the general public about the symptoms, and a willingness to talk about them and seek medical help, that will go a long way towards improving outcomes.”
“All I want is more time, and more life,” James told the BBC last week, pulling her dress up over skeletal shoulders. There was a sliver of comfort, she said, in knowing what she had done for those who would still have that chance. “To feel like you’ve had an impact is kind of one of the best feelings you can have.”