Thousands with cancer-causing condition offered life-saving NHS bowel cancer screening

The NHS is offering routine preventative bowel cancer screening to thousands of people in England with a genetic condition that increases their chance of developing certain cancers.

This is a world-first move by the health service to help reduce cases and identify bowel cancers earlier when successful treatment and cure is more likely.

As part of the NHS Bowel Screening Programme, people with Lynch syndrome are now invited for bowel surveillance every two years, where they are seen by a specialist team and assessed for a colonoscopy which checks for polyps and signs of bowel cancer.

Lynch syndrome is an inherited condition that increases the risk of certain cancers, including bowel, ovarian and pancreatic, but out of 100 people with Lynch syndrome, screening prevents between 40 and 60 people from getting bowel cancer.

Around 10,000 people in England are on the Lynch syndrome register and are being invited to join Lynch surveillance as part of the NHS bowel cancer screening programme, and with many more unknowingly living with the disease, thousands of extra cancers will potentially be diagnosed and treated earlier.

The routine colonoscopies will be offered at local bowel cancer screening centres, close to peoples’ homes making it more convenient for people to get tested.  

The health service also has a dedicated genetic testing programme for the condition and now almost all people diagnosed with bowel and endometrial cancer receive the initial test to check for Lynch syndrome – 94% on average between 2021-2023 which is up from 47% in 2019.

A diagnosis for Lynch syndrome not only helps guide more personalised cancer treatment but enables their families and relatives to be offered testing too.

Around 1,100 bowel cancers are caused by Lynch syndrome each year in England – and it is thought the syndrome increases the lifetime risk of developing bowel cancer up to around 80%.

Steve Russell, national director of screening and vaccinations for the NHS, said: “Our successful bowel cancer screening programme already helps identify thousands of cancers each year, and now thousands more people who have been diagnosed with Lynch syndrome will also be given regular colonoscopies to check for signs of cancer and to detect the disease earlier.

“Ensuring people who we know are at a greater risk of developing cancers get regular screening is key to diagnosing cancers at an earlier stage, and I’d encourage everyone invited to come forward and get their screening at a local centre near them.”

Professor Peter Johnson, clinical director for cancer at the NHS said: “Bowel cancer is now the most third common cancer in this country, with cases rising year on year, but it also tends to be one of the harder cancers to detect at an early stage because signs and symptoms usually appear later. This is why the NHS has rolled out a national bowel cancer screening programme to detect cancers earlier and ensure people can be treated sooner – which has now been expanded to include people with Lynch syndrome.

“As well as people coming forward for regular screening when invited by the NHS, it’s also important to remain vigilant of any potential symptoms such as a persistent change in bowel habits, blood in the poo, and abdominal pain – if you do notice any of these changes, please do come forward for checks at your GP surgery – getting checked saves lives.”

Genevieve Edwards, Chief Executive at Bowel Cancer UK, says: “With the Bowel Cancer Screening Programme managing Lynch syndrome surveillance we expect to see a vast improvement in the experience and outcomes for people with the condition.

“Those who have been diagnosed with Lynch syndrome will now have regular access to high-quality colonoscopy tests regardless of where they live in England.

“As the first country in the world to implement a programme like this we are leading the way in improving the care of people with Lynch syndrome and ultimately saving lives.”

It is estimated that 1 in 400 people in England have Lynch syndrome (equivalent to around 175,000 people), but just 5% are aware they are living with the condition.

People with Lynch syndrome are more likely to develop multiple cancers and be diagnosed at a younger age. For example, bowel cancer is most common in those aged over 50 but in someone younger, it may be a sign of Lynch syndrome.

The NHS is now able to identify the condition through a simple blood test, which then goes through a regional genomic laboratory hub, is sequenced, and then sent back to the referring clinician.

Relatives who receive a diagnosis of Lynch syndrome can be referred to genetic services to discuss regular testing options to help catch any cancers as early as possible, as well as to consider preventive options such as taking aspirin or undergoing risk-reducing surgery.

While the syndrome does not directly cause cancer, the genetic changes can lead to more abnormal cells developing, which then multiply and increase the risk of developing cancers, such as bowel, prostate and endometrial, among others.

Nicola Theis from Cheltenham is a university lecturer and was diagnosed with Lynch syndrome following her dad’s diagnosis with the hereditary condition.

She is now receiving regular preventative screening from NHS bowel cancer screening services and as a mum of two young children, she explains why this is so important.

“It all started when my dad was diagnosed with advanced bowel cancer in 2019 and only given months to live, which you can imagine was devastating for our family.

“I’d researched the importance of genetics in finding the most appropriate treatment options and after his results confirmed his cancer was linked to Lynch syndrome, he began receiving immunotherapy and incredibly this treatment began to shrink his tumour.

“Miraculously, he was cancer free in less than a year and his scans have been clear since. I’m so happy he’s still with us.

“After that, I was tested and diagnosed with Lynch syndrome too. Being part of the screening programme gives me the confidence that any cancers that may develop can be caught earlier when they’re more treatable.  

“It’s great that thanks to the NHS’s Lynch syndrome screening programme, more people like me and my dad will be regularly checked for bowel and other cancers.  

“If you think you might have Lynch syndrome, I’d really encourage you to discuss it with your GP. It could save your life.”

Health Minister, Andrew Stephenson said: “Identification and follow up of people at high risk of cancer is an important and ever-more feasible strand of our efforts to reduce deaths and illness from cancer.

“Today’s announcement means that those with Lynch syndrome can be routinely screened for bowel cancer, helping to identify potential issues in a timely way as part of the NHS bowel cancer screening programme. This means that the NHS has a better chance of finding cancers at a time when they can be more easily and effectively treated.

“The NHS has seen and treated record numbers of cancer patients over the past two years. As we drive forward our long term plan for the NHS we are seeing survival rates improve across almost all types of cancer, but we know we must go further to ensure that we catch cancer earlier and increase chances of survival.” 

Dr Robert Logan, NHS England’s national speciality adviser for endoscopy and bowel screening, said: “This is great news for patients with Lynch syndrome – not only has genetic testing for the condition increased massively in less than five years, but we are also ensuring that patients diagnosed with Lynch syndrome are then guaranteed to get the high quality surveillance colonoscopy they need from the national screening programme. This is the first time any country has been able to deliver such a comprehensive joined up approach to diagnosis and early intervention for one of the most common hereditable cancer syndromes.”

Tracy Smith, Trustee at Lynch syndrome UK, said: “Introducing Lynch syndrome patients to the National Bowel Screening Programme ensures that high risk patients receive regular surveillance in a timely manner and potential cancers are more likely to be caught earlier, thus saving lives.”

Dr Kevin Monahan, lead for the NHS England Lynch syndrome transformation project, said “Incorporating people with Lynch syndrome into the national colonoscopy screening programme is game-changing and will save many lives each year. It will deliver prevention and early diagnosis of bowel cancer through timely and high-quality colonoscopy. Now diagnosis of this hereditary condition in England will be linked to lifelong patient-focused care."