An eminent panel of medical experts has announced their support for Bowel Cancer UK’s campaign to ensure better diagnosis and treatment for people under the age of 50 who are at higher risk of developing the disease.

Currently, the campaign is focused on Lynch syndrome, an inherited condition which means that people have a 72 per cent higher risk of developing bowel cancer during their lifetime.

There are more than 1,000 cases of bowel cancer a year that are attributable to Lynch syndrome, many under the age of 50.

Yet in the UK, fewer than five per cent of families with Lynch syndrome have been identified.

Deborah Alsina, Chief Executive of Bowel Cancer UK said, “The Royal College of Pathologists recently produced best practice guidelines recommending everyone with bowel cancer under the age of 50 should be tested for Lynch syndrome at diagnosis. Speedy implementation is vital as testing is currently patchy at best and if people are tested at all, it is often after treatment ends. Yet a diagnosis of Lynch syndrome can affect treatment decisions.   We are therefore calling for all UK hospitals to implement this guidance swiftly.”

“This will also help to identify the risk to other family members who may also carry Lynch syndrome and who may be at higher risk of developing bowel cancer. Once identified, people at risk, including those diagnosed who have a greater chance of recurring or developing another linked cancer, should have access to surveillance programmes including regular colonoscopies. This will help to ensure bowel cancer is either prevented or detected early.”

Bowel Cancer UK’s call to action is endorsed by a panel of renowned medical experts:

• Dr Kevin Monahan, Consultant Gastroenterologist and General Physician at Family History of Bowel Cancer Clinic, West Middlesex University Hospital (WMUH), London
• Professor Sue Clark, Chair of the Colorectal Section of the British Society of Gastroenterology, Consultant Colorectal Surgeon, St Mark’s Hospital
• Dr Suzy Lishman, President, The Royal College of Pathologists
• Professor John Schofield, Consultant Pathologist, Cellular Pathology Department, Maidstone Hospital and Kent Cancer Centre
• Professor Ian Tomlinson, Professor of Molecular and Population Genetics, Group Head / PI and Consultant Physician, Wellcome Trust Centre for Human Genetics
• Professor Huw JW Thomas, Consultant Gastroenterologist, Family Cancer Clinic, St Mark' Hospital, London
• Professor Malcolm Dunlop MD FRCS FMedSci FRSE, Colon Cancer Genetics Group and Academic Coloproctology, Head of Colon Cancer Genetics, Institute of Genetics & Molecular Medicine
• Professor D Gareth Evans MD FRCP, Professor of Clinical Genetics and Cancer Epidemiology and Consultant Geneticist, University of Manchester
• Mark J Arends, Professor of Pathology University of Edinburgh and Chair of the Lynch / Mismatch Repair Protein Immunocytochemistry Module for NEQAS (National External Quality Assessment Scheme, UK)
• Dr Fiona Lalloo, Consultant in clinical genetics, Chair of the UK Cancer Genetics Group
• Shirley Victoria Hodgson, Emeritus Professor of Cancer Genetics, St. Georges University of London

They said, “Bowel cancer is consistently an under-recognised, under-diagnosed and inadequately treated condition and therefore many opportunities to save lives are missed and that is why implementation of this guidance is so important."

The campaign is also supported by the father of teenager Stephen Sutton. 

The campaign launch coincides with the six month anniversary of Stephen’s death on 14 November.

Andy is no stranger to bowel cancer. 

He was diagnosed with it twice – in 1989 at the age of 31 and 20 years later in 2009. 

It was only second time round that Andy was tested for Lynch syndrome. 

“Since then, I’ve discovered that because of my Lynch syndrome diagnosis, I should be having a colonoscopy every two years. Yet this has been difficult to organise and I am still only being offered it every three years.”

“If I had been genetically tested after the first diagnosis and given regular surveillance screening, it might have been possible to have prevented bowel cancer developing second time around, which would have been welcome as the second diagnosis was a terrible shock and the treatment much harder than first time.”

In recent months, Andy has done some research into his family medical history which showed that bowel cancer has been present in at least four generations, from his maternal grandfather who died at 31 of bowel cancer to his mum (who survived bowel cancer in her early forties but died aged 53 after a five year battle against leukaemia), Andy and, finally Stephen.

“I noticed Stephen wasn’t well when he was 15 and when as his symptoms continued, he must have gone to the doctors about five times and the hospital on three or four occasions. We kept telling them about my Lynch diagnosis, we even gave them a leaflet on it, but it was totally dismissed, everyone thought that Stephen was too young to get bowel cancer and you want to believe what you’re told by the medical profession, yet everyone now knows how wrong we all were."

Deborah Alsina said, “Andy’s family highlights in a tragic way the crucial importance of ruling out bowel cancer first not last in a family with Lynch syndrome. It also highlights the vital importance of genetic testing at diagnosis and the need for regular surveillance screening.
Other groups that should be in a surveillance screening programme include people with a strong family history or those who have had an inflammatory bowel condition for over ten years.”

A recent health economics study found that Lynch testing at diagnosis for everyone under 50 with bowel cancer would be cost effective enough to have been approved by NICE.

Source: Bowel Cancer UK