On Tuesday 10 December, Elaine Nangle and Emma Amos, two of our LBCUK Trustees, attended the Westminster Hall debate on the treatment of Lobular Breast Cancer led by Helen Hayes MP. Elaine and Emma were there to represent LBCUK and to put forward our questions to the Minister, as part of our Treatment Guidelines campaign. Also attending the debate were representatives from the Lobular Moonshot Project.
What we do at Lobular Breast Cancer UK
We are the only patient-led UK charity solely focused on Lobular Breast Cancer. We work with patients, researchers and health professionals to increase research into this distinct disease, advance information and knowledge about Lobular, and ensure that patients receive the most effective support and treatments.
As part of our commitment to increasing research, understanding and awareness of Lobular, we established and provide the secretariat for the UK Lobular Research Network. This involves health professionals, researchers and patient advocates. We are also the UK patient advocate representative for the European Lobular Breast Cancer Consortium and are on the Planning Committee for the International Invasive Lobular Carcinoma (ILC) Symposium.
Why UK treatment guidelines need to change
Every day, 22 women in the UK are diagnosed with Lobular Breast Cancer. That accounts for at least 15% of all breast cancer diagnoses. Lobular is the fifth most prevalent cancer in women – more common than melanoma skin cancer, ovarian, brain, kidney or pancreatic cancer.
Despite this, the National Institute for Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN) who determine UK breast cancer treatment guidelines do not recognise Lobular as the distinct disease shown in current research. As a result, women are not being treated with the most effective and therapeutically targeted treatments. Currently Lobular patients are treated the same as individuals with the more prevalent Ductal/No Specific Type (NST) breast cancer.
What we asked for in the debate
- Key UK organisations are playing an integral role in international collaborative Lobular research. There is a need for more research and funding to solve the Lobular’s challenges. Would the government commit to more funding across the UK institutions driving this work?
- The government to support a change in the current UK Treatment Guidelines to recognise that Lobular is a distinct disease requiring more targeted therapeutic approaches?
- The proportional representation of Lobular patients in breast cancer trials, and the capturing of Lobular data from such trials. Even the retrospective analysis of previous findings, would provide a wealth of research and information about Lobular.
- Efficacy of screening mammograms can drop as low as 11% for women with primary ILC tumours and dense breasts (Johnson.2015). Better methods of diagnosing and monitoring both primary and metastatic/secondary ILC are urgently required?
Attending the Westminster Hall debate on the treatment of Lobular Breast Cancer was both heartening and hopeful. It was encouraging to see personal, empathetic recognition of the unique challenges faced by patients with this distinct subtype of breast cancer. The investments in generalised breast cancer research are a positive step that will undoubtedly benefit Lobular patients as well. Most promising was the alignment of the Shadow Health Secretary with our LBCUK campaign to update national breast cancer guidelines, paving the way for a dedicated approach to diagnosis, treatment and monitoring of Lobular Breast Cancer. While the ask of further funding to build on existing collaborative UK Lobular research may remain a challenge beyond current government investment, the momentum towards supporting a change of breast cancer guidelines to acknowledge Lobular as a distinct disease is incredibly positive, and I am optimistic about the next steps.
Elaine Nangle, LBCUK Trustee
If you are interested in getting more involved in our Treatment Guidelines campaign in 2025, please get in touch with us at LBCUK. https://lobularbreastcancer.org.uk/contact-us/