Abstract PO2-11-09: European Lobular Breast Cancer Advocates: Bridging the Geographical Gaps in Lobular Breast Cancer Education and Awareness
Authors: Siobhan Freeney, Helene Bonval, Esther Geven, Lori Petitti, Rian Terveer, Claire Turner, Cathrin Brisken, Patrick Derksen, Christine Desmedt, Thijs Koorman, ADRIAN LEE, Steffi Oesterreich, Anne Salomon, George Sflomos, Karen Van Baelen, Tone Lien, Damir Vareslija, Sabine Linn
Journal: Cancer Research (2024)

Abstract Introduction In 2019, Invasive Lobular Cancer (ILC) Patient Advocates attended the 3rd meeting of the European Lobular Breast Cancer Consortium (ELBCC), a scientific community focused on lobular research and treatment. European Lobular Breast Cancer Advocates (ELBCA) now have a network of ILC patient advocates across Europe. ILC is classified by the World Health Organisation as the most common Special Type of Breast Cancer. In 2022 there were 576,300 diagnoses of breast cancer in Europe, 15% ~86,500 were ILC. ILC is a histologically distinct breast cancer with diverse presentations including a tendency to metastasize to unique locations. Current endocrine therapies may have different effectiveness for ILC making treatment challenging. Current imaging tools are often unreliable with up to 30% of ILC tumours not identified on mammograms and detection is often delayed. Challenges There are no standardised European diagnostic or treatment protocols for ILC. ELBCA addresses this with collaborative efforts between ILC medical professionals and researchers. It’s a major challenge because each European country has a different health care system and economic policy structure. It’s also a challenge to streamline the translation of clinically accurate information to European patients in their own language. Not all European countries are members of the EU, there are a minimum of 24 official European languages. Established European breast cancer patient organizations often don’t distinguish between different histological subtypes. Current European policy and administrative processes have hindered the formation of a not-for-profit Advocacy Organization. Without such an organization, fundraising and collaborative efforts with others is difficult. Conclusions ELBCA has made significant progress towards raising awareness and increasing knowledge of ILC across Europe. Our poster will expand on these accomplishments as well as the following goals: Work with European and International ILC research and patient communities to better understand this unique histological subtype. Elevate ILC research priorities and inform European policy to recognize ILC as a distinct disease. Enhance education of ILC among primary HCP’s and patients. Establish a recognized European ILC Advocacy Organization and collaborate with established BC organizations. Attend major BC research and clinical conferences. Lobby to achieve increased funding for ILC research and clinical trials. Citation Format: Siobhan Freeney, Helene Bonval, Esther Geven, Lori Petitti, Rian Terveer, Claire Turner, Cathrin Brisken, Patrick Derksen, Christine Desmedt, Thijs Koorman, ADRIAN LEE, Steffi Oesterreich, Anne Salomon, George Sflomos, Karen Van Baelen, Tone Lien, Damir Vareslija, Sabine Linn. European Lobular Breast Cancer Advocates: Bridging the Geographical Gaps in Lobular Breast Cancer Education and Awareness [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-11-09.