Lynch syndrome is an inherited disorder that puts people at higher risk of developing bowel cancer and developing it at a younger age too. Whilst the average age for people diagnosed with bowel cancer is 72, for those with Lynch syndrome the average age at diagnosis is 45. Unfortunately, those people diagnosed at a younger age are also more likely to have advanced disease at diagnosis, meaning they are less likely to respond well to treatment.
That’s why in 2014, the Royal College of Pathologists made testing for Lynch syndrome in bowel cancer patients mandatory. Not only does the test give vital information about recurrence risks and treatment options for the individual being tested, it also has benefits for their family members. If a bowel cancer patient is found to have Lynch syndrome then their relatives will also be offered the test. This means doctors could identify other family members who have not yet developed bowel cancer but are at increased risk because of Lynch syndrome. They could then benefit from closer monitoring, earlier detection and increased chances of survival.
However, research conducted by Bowel Cancer UK and the Royal College of Pathologists shows that this advice, sadly, is not being followed. Whilst in Northern Ireland 100% of hospitals were testing for Lynch syndrome, this number fell to 69% in England and only 29% in Wales. Scotland fared better at 93%.
There is some good news though, whilst these numbers seem low they are in fact an improvement compared with figures from 2015 where 51% of hospitals across the UK were failing to test patients under the age of 50 for the syndrome. This year, 71% of hospitals are meeting the target.
However, there is still room for further improvement. Asha Kaur, policy manager at Bowel Cancer UK, urged hospitals to work together. “The guidelines have now been in place two years and there are still 40 hospitals in England alone not doing the test at all, plus a huge variation in approach to testing across the UK.”
Kaur also advises those with a family history of Lynch syndrome or a family history of bowel cancer to go to their GPs and ask about testing for the disorder.