Lynch Syndrome Early Diagnosis Pathway for Endometrial 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 in England at least 260 endometrial cancers are caused by Lynch syndrome, making it the most common form of hereditary endometrial 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, The Eve Appeal).
For this reason, NICE has produced guidance that recommends that all people with endometrial cancer are tested for Lynch syndrome (NICE DG42).
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, a training programme has been developed to:
- support Trusts across England 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 healthcare professionals, so they can identify and consent patients for genetic testing at the routine oncology appointments. Any healthcare professional involved in the care of patients with endometrial cancer (i.e. surgeon, oncologist, or nurse specialist) can complete this training.
There are four different training courses:
- Training for MDTs Option 1. Suitable for MDT members to help them identify patients likely to have Lynch syndrome and refer these patients to genetic testing.
- Training for MDTs Option 2. Suitable for MDT members to help them identify patients likely to have Lynch syndrome, offer genetic testing to these patients, and manage their care after receiving the genetic test results.
- Training for Pathologists
- Training for Primary Care Clinicians
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.