Lynch Syndrome

Earlier cancer diagnosis for patients with Lynch syndrome (LS) to improve patient outcomes.

LS is a rare condition that can run in families and lead to a higher risk of developing certain cancers such as bowel, womb (endometrium), stomach and pancreatic.

Did you know that an estimated 200,000-300,000 people in the UK have Lynch syndrome, but only 5 per cent have been tested and diagnosed? Improved testing could make a huge difference to treatment for patients with Lynch Syndrome and reduce their cancer risk.

How will this project make a difference?

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

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

Identifying patients who have LS means that they can be monitored from a younger age, to identify the development of tumours sooner. This will allow earlier treatment and, in some instances, preventative measures to be taken, providing better outcomes for patients.

The project will initially focus on colorectal and endometrial cancer patients and over time the programme will aim to extend LS testing across other relevant tumour types. Identifying people with LS will also provide the opportunity to enrol them into National cancer screening programmes before they develop other cancers and prevent them through risk reduction and interventions such as colonoscopy surveillance, early surgery and drugs such as aspirin.

A diagnosis of LS can also influence the type of treatment plans for people who have or develop cancer, including impacting the surgical approaches chosen and the use of specific immunotherapy and chemotherapy treatments. In addition, a diagnosis may impact access to emerging therapies and research programmes.

Nationally, the project is being led by NHS South East and NHS North Thames GMS Alliances. The NHS North East and Yorkshire (NEY) Genomic Medicine Service Alliance, in collaboration with the four Cancer Alliances in the region, is responsible for oversight and coordination of the project in our region.

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

What are we doing in the North East and Yorkshire?

In the North East and Yorkshire, our aim is to make sure that we are testing all the patients we should for potential LS, so that they can join national LS cancer screening programmes and patient groups.

To do this, we need to reach all cancer healthcare professionals, so that they are aware when LS testing is needed and know what to do afterwards with a positive result.

What have we done so far?

We’ve begun working with cancer MDTs to make sure they are aware of this project and can access expert knowledge on the subject.

We’re also now working with the national cancer registry to ensure all the known families with LS in North East and Yorkshire are registered, so that they can access national screening programmes in the future.

What training is available?

There are several training courses available, tailored for different health professionals’ roles to help with understanding Lynch syndrome, the process and procedures for testing, and how to manage patients’ care after they have received a diagnosis. You can sign up for these online courses and start learning more about Lynch syndrome and how you can help embed testing in your practice today.

Training for colorectal cancer MDTs: https://rmpartners.nhs.uk/lynch-syndrome-early-diagnosis-pathway-colorectal-cancer/

Training for endometrial cancer MDTs: https://rmpartners.nhs.uk/lynch-syndrome-early-diagnosis-pathway-endometrial/

Training for GPs: https://rmpartners.nhs.uk/lynch-syndrome-online-training-for-primary-care-clinicians/

Training for pathologists: https://rmpartners.nhs.uk/lynch-syndrome-online-training-for-pathologists/

Where else can I find out more?

The Genomics Education Programme website has information for NHS healthcare professionals relating to Lynch syndrome, its diagnosis, testing, clinical management and care:

https://www.genomicseducation.hee.nhs.uk/documents/lynch-syndrome/

We have also established a NEY GMS Community of Practice for Clinical Nurse Specialists working in Lynch testing pathways. If you’d like to join this informal peer support network to share problems, practice and progress, please email Karen Westaway.