Introducing our #DistinctlyLobular campaign

Currently, Lobular Breast Cancer is barely reflected in UK national treatment guidelines for breast cancer. It’s only mentioned once in the guidelines, and that is a recommendation for a pre-surgical MRI scan to determine tumour size before surgery.

We aim to change that.

#DistinctlyLobular is our campaign to ensure that Lobular Breast Cancer is recognised and treated as a distinct disease across the UK health system. Our main aim is achieve change in breast treatment guidelines, which are determined by the National Institute for Health and Care Excellence (NICE) in England, and usually adopted by Northern Ireland and Wales, and by Scottish Intercollegiate Guidelines Network (SIGN) in Scotland.

Our campaign involves a range of activities, including:

• a Lobular patient impact survey,
• a MP drop-in at Portculis House,
• delivery of a  James Lind Alliance Priority Setting Partnership to build the evidence base to change treatment guidelines,
• our new Lobular information leaflet, available to download and share,
• our new Lobular information digests for healthcare professionals.

To find out more about the campaign and how you can get involved, visit our #DistinctlyLobular campaign page.