It’s been a very busy, and rewarding, year at Lobular Breast Cancer UK. As a volunteer-led charity we are so proud of everything our amazing patrons, trustees, founders, fundraisers, partners and our Scientific & Medical Advisory Group have achieved. It’s thanks to their tireless dedication and support that we are able to put Lobular Breast Cancer firmly in the spotlight and help increase understanding, earlier diagnosis, research and funding.
Thank you to everyone who has supported our work through the raising of funds during 2024- from hikes and zumbathons to cake sales and in memoriam donations. Your support is so important and key to our work, thank you.
Working together, we can all live well.
Our highlights for 2024
Governance
At the start of the year we welcomed four new trustees to Lobular Breast Cancer UK: Anne Carey, Sara MacLennan, Hannah Phillips and Jane Sedcole. Together they bring experience in clinical practice, fundraising, marketing and communications and psycho-oncology research. They have all had a Lobular Breast Cancer diagnosis bringing a greater diversity of lived experience to the charity. This brought our board up to eight trustees, who are all dedicated to working together to save more lives by unlocking the challenge that is Lobular Breast Cancer.
Advocacy
In April we were invited to represent Lobular patients at the All-Party Parliamentary Group on Breast Cancer (APPGBC). The APPGBC provides a forum for MPs and Peers to discuss important issues affecting patients with breast cancer and encourages discussion between parliamentarians, government, the NHS and people living with or affected by breast cancer.
Over the summer we launched our Treatment Guidelines campaign, starting with the first ever UK-wide Lobular Patient Survey. We owe a big thank you to the 644 individuals who shared their own experiences of a Lobular diagnosis, resulting in direct evidence of the treatment disparities across the UK.
In September we attended the International Invasive Lobular Carcinoma (ILC) Symposium in Leuven, Belgium, the only conference solely dedicated to Lobular Breast Cancer. We presented some of the initial findings from our Lobular patient survey and the development of co-created new patient resources. We are using the survey findings to build our campaign with NICE and SIGN to support changes in the UK breast cancer treatment guidelines, and to highlight Lobular priorities in the UK. The findings will also be used to continue to improve and increase the information resources available for women with a Lobular diagnosis at different stages of treatment.
LBCUK’s patient advocates Dr Helen Coulthard and Professor Sara MacLennan led a packed session, at the Symposium, on Psychosocial and Lifestyle Impacts of an ILC Diagnosis.
Claire Turner, one of our Trustees, was selected to join the Patient and Public Involvement (PPI) Forum for the National Audit Primary Breast Cancer (NAoPri). The PPI Forum provides advisory support and ensures that patient voices are reflected in proposed actions responding to the NAoPri findings.
Information and support
In July, together with De Montfort University, we launched our Treatment Support digital postcards. These were created with Lobular patients, health psychologists at De Montfort University and patient advocate Jo Taylor, from abc diagnosis. Each card provides support during diagnosis of primary and secondary Lobular and different stages of primary treatment. They include some suggested questions to ask your medical team. We will be expanding these in 2025 for people with a secondary/metastatic diagnosis.
This year we formed a new partnership with Future Dreams, an organisation that believes that nobody should face breast cancer alone or without hope. We provided two online and two in-person meet ups enabling anyone with an Lobular diagnosis to connect and share experiences.
Working to increase the knowledge of Lobular Breast Cancer and its impact on patients, we provided a webinar on Patient Experiences of Lobular Breast Cancer to Breast Care Nurses across the UK in partnership with Breast Cancer Now and a further workshop for Nurses at The Nightingale breast clinic, Wythenshawe Hospital, Manchester.
Research
In April we attended the European Lobular Breast Cancer Consortium (ELBCC) Research meeting in London, listening and contributing as patient advocates to the latest Lobular research being driven by ELBCC’s Working Groups.
This year we co-authored on three international ILC research publications and collaborated as patient advocates on six ILC research applications.
We continued to co-ordinate the UK Lobular Research Network, a biannual collaborative meeting that we established in 2023. The Network brings together all of the health professionals, patient advocates and researchers committed to driving forward Lobular research and improving clinical outcomes for patients.
Media and reach
In March we featured on Victoria Derbyshire’s ‘& then came breast cancer’ podcast. The episode was all about Lobular Breast Cancer and you can listen to it on Acast.
We worked with the Mail on Sunday health pages in October, sharing the personal stories of GPs diagnosed with Lobular Breast Cancer. Their stories made the front page, as well as an inside double-spread, and have resulted in the development of new GP Lobular Working Group for 2025.
21,000 people visited our website and downloaded 1,200 information resources. Our website traffic increased by over 20% from 2023, showing the need for dedicated information about Lobular Breast Cancer.
Looking ahead to 2025
In 2025 we will continue to drive forward our Treatment Guidelines campaign. We will be focusing on building a strong evidence based case for change to NICE and SIGN, working with patients, patient advocates, health professionals and researchers from across the UK.
We want to increase the connections amongst patients, and improve the resources and information that we provide, especially for women facing a metastatic Lobular diagnosis.
We look forward to working together with our partners and stakeholders to continue driving forward change for everyone diagnosed with and affected by Lobular Breast Cancer.