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Lynch Syndrome Early Diagnosis Pathway for Colorectal Cancer

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).

For this reason, the National Institute for Health and Care Excellence (NICE DG27 diagnostic pathway) has recommended that all people with colorectal cancer are tested for Lynch syndrome.

Implementing Lynch syndrome pathways nationally provides an opportunity to detect many of these cancers at an earlier stage. It may also help to prevent cancers through risk reduction treatments and appropriate surveillance programmes for patients, and their at-risk family members, who are not yet aware that they have Lynch syndrome and are at risk of developing cancer.

Furthermore, a diagnosis of deficient MMR (dMMR) can affect cancer treatment options, with certain tumours being more responsive to particular chemotherapy agents. People with Lynch syndrome are also responsive to new immunotherapy drugs. It is therefore important that the initial tumour test (IHC or MSI) is done in time to inform treatment options.

To assist healthcare professionals in testing patients for Lynch syndrome, we have developed a training programme to:

  • support Trusts across west London to improve delivery of their local diagnostic pathway for Lynch syndrome
  • improve uptake of genetic testing for Lynch syndrome through integration into standard cancer clinics.

This will be achieved by providing training and support to clinicians, so they can identify and consent patients for genetic testing at the routine oncology appointments. Any clinician (i.e. surgeon, oncologist, or nurse specialist) involved in the care of patients with colorectal cancer can complete this training.


The training involves watching six short videos which cover all the different stages of the Lynch syndrome pathway, and then completing an online questionnaire to ensure that the clinician has understood correctly the processes and procedures for testing.

The training involves watching short videos which cover all the different stages of the Lynch syndrome pathway, and then completing an online questionnaire to ensure the processes and procedures for testing have been understood correctly. In addition, there is a range of supporting documents to help understand this pathway.