Reflections on the progress and challenges of saving lives from bowel cancer

by Deborah Alsina MBE, Chief Executive, Bowel Cancer UK

On 26 June, it will be ten years since my father (pictured right) died of bowel cancer – just six months after his diagnosis. In fact in that same year, and since then, almost 160,000 people have also died. This unwelcome ten year anniversary and the start of Bowel Cancer Awareness Month has made me reflect on the progress we’ve made and the challenges still to address.

Bowel cancer today…

Today over 41,000 people continue to be diagnosed each year. Whilst 94% of diagnoses occur in people over 50 (84% over 60), there are also over 2,500 people diagnosed each year under the age of 50.  This number has gone up by 45% since 2004, yet there is still a myth that you can be too young for bowel cancer.  In fact bowel cancer affects people of all ages. The impact of this myth is that 34% of under 50s are being diagnosed as an emergency (compared to 20% of the whole population), 60% at later stages of the disease when survival is poorer.

The good news is that survival rates for bowel cancer as a whole are slowly increasing. This is thanks to the dedication of many excellent clinicians and scientists, which have led to improvements in, for example, surgical techniques and an increased range of personalised medicines.  Yet, five year survival rates remain too low at under 60%.

There has been much publicity that survival rates for bowel cancer are significantly lower in the UK than in other parts of Europe and it is becoming increasingly clear that despite efforts to address this, the gap is not closing. Yet this is a cancer that is preventable, treatable and curable.  So why do so many people continue to die?  Well of course there is not a simple answer but these are some of the challenges.

The root of the problem – late diagnosis

The stage of your diagnosis significantly affects your survival – most people diagnosed at stage 1 will survive bowel cancer but this drops significantly to under 10% as the disease becomes more advanced and spreads around the body.  Unfortunately in the UK around 50% of people are either initially diagnosed at or end up progressing to stage 4.

One of the reasons for this is that awareness of bowel cancer and its symptoms, which whilst improving, remains too low, leading to people delaying acting upon their symptoms or not realising they need to. This is exacerbated because symptoms can also be unclear or confused with other benign conditions and this makes it harder for those affected to know whether to take action and for their GPs to decide who should be referred through for urgent diagnostic tests. GPs are expected to act as gatekeepers to diagnostic services and are all too frequently criticised for referring people or not referring people and this debate needs to change. The reality is we need bowel cancer ruled out more quickly within the diagnostic process.  

We also do not adequately identify people with genetic conditions such as Lynch syndrome, who are at high risk of bowel cancer. Whilst it is encouraging that new NICE guidance has recommended universal testing for Lynch syndrome for everyone diagnosed with bowel cancer, this still needs implementing. Once detected, gene carriers also need access to regular high quality screening but currently this is at best patchy across the UK.

Screening – the best way to get diagnosed early

In the ten years since my father’s death, all four nations of the UK have introduced a bowel cancer screening programme and perhaps that might have helped him too.  Research has clearly shown that diagnosis via screening – i.e. before people have symptoms– gives people the best chance of an early diagnosis.  In fact 97% of those detected through screening will survive more than five years compared to 49% of those diagnosed via an emergency admission. However, only 10% of bowel cancers are currently being detected via screening.

We are fortunate to have brilliantly run high quality programmes which are saving lives, however the current test used, the faecal occult blood test (FOBt), isn’t good enough.  It has unacceptably high levels of missed cancers and due to the fact that it requires people to collect three stool samples, many people decide not to take the test.  Current uptake rates are around 55% across the UK.

However there is good news - the Governments of England, Scotland and Wales have agreed to introduce a simpler (only one stool sample required) and potentially more sensitive test, the faecal immunochemical test (FIT).  Pilots have shown that this will increase uptake by up to 10% and importantly including people who have previously not taken the test and harder to reach groups. 

One of the most exciting aspects of FIT is that the sensitivity level can be altered; meaning the cut-off level for detecting small amounts of blood in the stools can be adjusted to make it a more or less sensitive test.  It has also been shown to be cost effective at every sensitivity level.  This clearly means that we have the potential to detect more cancers, and also more pre-cancerous growths called polyps, but it will also detect other benign conditions and trigger further tests like a colonoscopy which is not without risk. There is clearly a sweet spot to be found between how sensitive and specific the test is so it can be introduced at the right level in order to detect as many cancers as possible but not subject people to invasive tests unnecessarily.

Increasing capacity

Unfortunately right now this is all academic, as our endoscopy services could not currently cope with a large increase in the numbers of people doing the screening test or a significantly increased positivity rate (i.e. finding more people with blood in their stool). Therefore it’s not possible to introduce FIT at the right level straight away. 

Currently endoscopy units are severely overstretched with waiting times going up and breaches of waiting times standards increasing. Despite years of discussion, capacity modelling reports, quality improvement initiatives and instructions from the upper echelons of the NHS or Department of Health to commission more capacity, this is simply not happening fast enough to meet increasing demand.   A lack of capacity to carry out tests for bowel cancer is the root cause for many of the challenges facing bowel cancer today.

So to ensure that the new screening test is introduced at a level which gives the best chance to detect as many cancers as early as possible, we have been working closely with the screening teams and other experts to agree a way ahead with clear goals and timelines so that sensitivity rates can improve as endoscopy capacity becomes available.  But the truth is in the meantime the opportunity to prevent cancers developing or to detect it early will be lost for thousands of people.

For me, when I think about the grief caused to my family when we lost my father and to the thousands of other families experiencing the same each year, this is unacceptable. I cannot accept that a lack of endoscopy capacity can continue to lead to needless premature deaths. Our focus must be on preventing bowel cancers or detecting it early so we can drive down mortality rates. 

We need more endoscopy capacity and we need it urgently. Delays and a lack of strategic joined up action must not be allowed to continue - as not only are they costing lives, they are also costing the NHS money from the expensive treatments that people require when they enter the system at a later stage.  Whilst being fully aware of the complications – including the time it takes to train endoscopists - this makes no sense and should be addressed as an urgent national priority in all four nations.

So this Bowel Cancer Awareness Month if you do just one thing please sign up to be a campaign supporter. We can then update you about our campaign plans to drive change and address these issues and involve you in future actions.  If you could donate too – even become a friend to the charity – that would be incredible as we are completely reliant on donations from the public and like-minded organisations to continue our work. 

Ten years ago I lost my father to bowel cancer due to a late diagnosis. My determination is stronger than ever to stop this happening to other families. But we at Bowel Cancer UK cannot do this alone.  Please take action today and help us ensure that bowel cancer does not take away other people’s chance of living and enjoying the life they had ahead of them. 

Please help to #STOPbowelcancer