NICE recommends all bowel cancer patients to be tested for Lynch Syndrome

Today (Friday 21 October) the National Institute for Health and Care Excellence have announced draft guidance recommending that everyone who is diagnosed with bowel cancer should be tested for Lynch syndrome. This is good news as this genetic condition increases a person’s risk of a bowel cancer diagnosis by up to 80% in some cases.

We have raised awareness of the condition and campaigned since 2013 for this change as part of our flagship campaign Never Too Young – a campaign which aims to improve the diagnosis and care of younger bowel cancer patients. Lynch syndrome increases gene carriers risk of developing bowel and other cancers at a younger age.

Up until now, Royal College of Pathologists clinical guidance has recommended that only people under the age of 50 are tested for Lynch syndrome but by widening out testing to everyone diagnosed with bowel cancer more people with the genetic condition can be identified. This is especially important as we know only less than 5% of people with Lynch, out of a possible 175,000 people.

Furthermore, our research with Royal College of Pathologists found that just over half (56 per cent) perform the test automatically and only one in ten test at diagnosis prior to any treatment, as stated in the guidelines – read our FOI report here. We hope that this draft guidance will be finalised quickly and publication will lead to more hospitals testing for Lynch syndrome for people of all ages.

This draft recommendation is the first step in testing patients diagnosed with bowel cancer for Lynch Syndrome. NICE will now consult on the draft recommendation, then the NICE Committee will finalise the guidance, which will be published early 2017.

Lynch Syndrome is the most common cause of hereditary bowel cancer and people with it also have an increased risk of developing other cancers including womb, ovarian and stomach.

By knowing if people have Lynch syndrome, the patient and their family can be offered a surveillance programme to receive regular colonoscopy, which can reduce their chance of dying from bowel cancer by 72 per cent. It will also reduce their risk of a recurrence of a diagnosis, and inform treatment options.

Deborah Alsina MBE, Chief Executive, Bowel Cancer UK, said:

“Today’s announcement by NICE to recommend that all bowel cancer patients are tested for Lynch Syndrome represents a critical step forward in saving more lives from bowel cancer.

We have been calling for improvements to the identification of this group of high risk patients since we launched our Never Too Young campaign in 2013, as people who have Lynch syndrome typically develop bowel cancer at a younger age - usually under the age of 50.

Testing for Lynch Syndrome has a vital role to play in detecting bowel cancer early, when it is more treatable and chances of survival are high. This hereditary genetic condition has a devastating impact on families. We hear every day how generations have been affected by cancer because they have Lynch Syndrome.

We will continue to campaign for this to be the final recommendation, which we expect from NICE early next year.”

Become a campaign supporter and help lead the lead change for younger people

Share your story. If you’ve been diagnosed with bowel cancer at a young age we want to hear from you