From working group to the Lancet – A case for universal testing of cutaneous sebaceous carcinoma in Lynch syndrome detection

Did you know, it is estimated that 1 in 400 people in England have Lynch syndrome but less than 5% of these individuals are aware they are living with this condition? People with Lynch syndrome are more likely to develop multiple cancers and from a younger age, including bowel and endometrial cancer, both of which are recommended by NICE to undergo automatic diagnostic testing for Lynch syndrome in the UK. 1 in 5 patients with cutaneous sebaceous carcinoma, a rare type of skin cancer, have underlying Lynch syndrome but are not offered automatic diagnostic testing.

A working group of experts in Lynch syndrome and sebaceous carcinomas was assembled in partnership with the national patient group Lynch Syndrome UK in an effort to identify barriers to Lynch syndrome testing in sebaceous carcinomas and problem solve. Professor Neil Rajan and Dr Katie Best chaired the first meeting in May 2023. This Patient and Public Involvement and Engagement initiative led to the publication of our position statement on mandating reflex Lynch syndrome diagnostic testing of sebacous carcinomas in The Lancet Oncology https://doi.org/10.1016/s1470-2045(23)00595-8