Lynch Syndrome

3 min read

Non-urgent advice: NEW Lynch Syndrome Expert Networks providing MDT care and support

Two new multidisciplinary expert networks are now offering expert, equitable care and support for Lynch Syndrome patients. Healthcare staff can refer their LS patients to monthly clinics:

What is Lynch Syndrome?

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.

Lynch syndrome is the most common cause of hereditary colorectal cancer. People with Lynch syndrome are more likely to get colorectal cancer and other cancers, and at a younger age (before 50), including endometrial, stomach, liver, kidney, brain, and certain types of skin cancers.

Currently around 95% of people in the UK who have Lynch Syndrome have not been identified through testing and are therefore not able to enter monitoring or treatment.

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.

What are we doing?

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

We want to support the local NHS to deliver a comprehensive service for patients for the detection of Lynch Syndrome. We are doing this by embedding standardised and equitable Lynch testing pathways for colorectal and endometrial cancer across the geographic region by applying best practice learned from major centres to all providers in the region.

We are also 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.

Who are we working with?

Regional Cancer Alliances (East Midlands and East of England)
Integrated Care Boards and primary care teams
Clinical Genetics teams within NHS Trusts in the region
National Lynch Syndrome Transformation Programme (led by NHS South East and NHS North Thames GMSAs)

Meet our team

Vicki Kiesel, East GMSA Lynch Syndrome Lead (victoria.kiesel@uhl-tr.nhs.uk
Melissa Cambell-Kelly, East GMSA Associate Nurse (melissa.cambellkelly@nnuh.nhs.uk)
Jo Lowry, Regional Programme Manager, (jo.lowry@uhl-tr.nhs.uk)

Watch our 'Lynch Syndrome 'Genomics BITE' session' from April 2023

Link: https://youtu.be/0ttki8S8nAI

Information for patients

Information for healthcare staff

National Guidance

We have created a new page containing a number of Lynch syndrome resources for, and developed with, clinicians - all based on national guidance. These include:

information and guidance documents
management guidelines and protocols
templates for patient letters and family history taking
patient information on colorectal and endometrial cancers

Visit the page to view and download the resources.

NEW September 2023: NHS England Implementing Lynch syndrome testing and surveillance pathways: A handbook to support local systems (opens in a new tab)

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 (opens in a new tab)). In October 2020, NICE also recommended testing for Lynch syndrome in people who are diagnosed with endometrial cancer using IHC (DG42 (opens in a new tab)).

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 (opens in a new tab) 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 (opens in a new tab)

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.

Education and training

Genomics Education Programme

Queries and contacts

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