National Lynch Sydrome Project

One aim of the NHS Long Term Plan is that 75% of cancers will be diagnosed at an early stage. This can be achieved through targeted screening and personalised surveillance of those most at risk of developing cancer, such as those with Lynch syndrome.

Each year, 1,100 colorectal cancers are caused by Lynch syndrome, making it the most common form of hereditary colorectal cancer. An estimated 175,000 people have Lynch syndrome in the UK, but fewer than 5% of individuals know they have the condition (Bowel Cancer UK).

Lynch syndrome is an inherited genetic condition caused by a germline pathogenic variant in one of four DNA mismatch repair (MMR) genes. Pathogenic variants in another non -MMR gene, known as EPCAM, can also cause Lynch syndrome.

The main concern in Lynch syndrome is colorectal (bowel) cancer. Around half of all people with Lynch syndrome develop colorectal cancer. For women, endometrial (womb) cancer is also a concern, and to a lesser degree ovarian cancer. There is small increase in the likelihood of developing a few other cancers: pancreatic, kidney, urinary tract, skin, brain and gastrointestinal cancers. However, these other cancers are seen only occasionally, and the increased risk is small – generally less than a 5% increase if you compare this risk to rest of the general population.

More information about Lynch Syndrome is provided below, together with information about testing and screening, action needed by cancer services, resources for health professionals (information for patients, standard operating procedures, management of the condition, implementing care pathways), as well as training videos and helpful websites.