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East Genomics

Lynch Syndrome

Leads: NHS South East and NHS North Thames GMS Alliances

Lynch syndrome (LS) is a rare condition that can run in families and can lead to a higher risk of developing certain cancers including in the bowel, womb (endometrium), stomach and pancreas.

This project aims improve the early detection of cancer, and access to personalised care for people with Lynch syndrome.

This will be achieved by embedding standardised and equitable testing for LS across England, monitoring and addressing geographical variation in testing, supporting the development of the infrastructure needed for testing and expanding pilot testing and assessing the benefits for patients.

Identifying patients who have LS means they can be monitored from a younger age meaning tumours could be caught sooner. If this happens, treatment would be more effective.

As of June 2022 there are Multi-Disciplinary Team (MDT) Lynch Champions for endometrial cancer in 46% of MDTs and 67% for colorectal cancers. Over 100 healthcare professionals have completed the national training module on colorectal and gynaecological cancer.

National Guidance

Lynch syndrome testing for people with colorectal cancer has been recommended since 2017 using Immunohistochemistry (IHC) or Microsatellite Instability (MSI) testing (Diagnostics Guidance (DG) 27). In October 2020, NICE also recommended testing for Lynch syndrome in people who are diagnosed with endometrial cancer using IHC (DG42).

Several types of tests can be done in different orders and combinations to see if either colorectal cancer or endometrial cancer are likely to have been caused by Lynch syndrome. The MLH1 promoter hypermethylation test is recommended at certain points of the tumour testing pathway.

If both IHC/MSI and MLH1 tests show that a person may have Lynch syndrome, genetic testing of a person's non-tumour DNA should be done to confirm this.

Preventative treatment and screening is available for the patient and at risk relatives.

National information and helpful flowcharts have been developed to support the implementation of the Lynch Syndrome testing and surveillance pathways.

East of England Cancer Alliance

The East of England Cancer Alliance web page contains useful information about Lynch Syndrome, 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.

Lynch Syndrome :: East of England Cancer Alliance

Information is expected to be added to the East Midlands Cancer Alliance webpage soon, however the above information should be helpful to all healthcare professionals.

If you have any questions, please don’t hesitate to contact one of the team:

For East of England enquiries:

Regarding testing, email: add-tr.eastglhcancertests@nhs.net

For discussion of clinical cases please contact Dr Ruth Armstrong, Consultant in Clinical Genetics or Bev Speight, Principal Genetic Counsellor on add-tr.ClinicalGenetics@nhs.net

For East Midlands enquiries:

For tests at our Nottingham laboratory, contact:

To speak to the Clinical Genetics team in Leicester, please call: 0116 258 7565