Abstract

Simple SummaryThis commentary reflects a collaborative effort between international Invasive Lobular Carcinoma (ILC)-focused breast cancer researchers, clinicians and patient advocate leaders. It offers a perspective on the progress made in ILC research in recent years and discusses the recent rise in patient advocate involvement to advance ILC research, raise awareness and educate about this disease. It outlines several distinct challenges in conducting ILC research and describes opportunities and suggestions for ways researchers, clinicians and advocates can work together to advance ILC research to develop new therapies and refine the care offered to patients.Breast cancer research and therapies have significantly advanced in recent years. However, Invasive Lobular Carcinoma (ILC), the second most common histological type of breast cancer and the sixth most frequently diagnosed cancer of women, has not always benefited from critical analysis, missing opportunities to better understand this important subtype. Recent progress understanding the biological and behavioral differences of ILC demonstrates that it is a unique subtype of breast cancer which can respond differently to common therapies. These new insights have increased interest in researching lobular breast disease. Concurrently, the formation of motivated patient-led advocacy organizations working in partnership with basic, translational and clinical researchers creates new opportunities, including connecting a dispersed patient population to research, encouraging new research funding and connecting patient advocates to researchers to advance common goals. This commentary will explore the unprecedented opportunity to drive multidisciplinary, multicenter and international collaborative research into lobular breast cancer that builds on recent research progress. Collaborative research partnerships that include advocates can result in a better understanding of ILC, identify targeted therapies and refine standard of care therapies that are currently equally applied to all breast cancers, resulting in improvements in the diagnosis, treatment and follow-up care for patients with ILC.

Highlights

  • Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations

  • Incidence rates are expected to be similar in Europe; for example, in Belgium, Invasive Lobular Carcinoma (ILC) accounts for 14% of all breast cancers diagnosed in 2014–2018 (Belgian Cancer Registry, Brussels, Belgium)

  • These results suggested that the efficacy of commonly administered endocrine treatments could differ between patients with Invasive Ductal Carcinoma (IDC) and ILC

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Summary

Historic View of Lobular Carcinoma Is Challenged by New Evidence

Invasive Lobular Carcinoma (ILC) is the second most frequently diagnosed histological type of breast cancer. Whatever information is obtained in the few years from on-going clinical trials regarding management of breast cancer will be directly applicable to this variant” [5] This 40+ year old historic view has been challenged recently, opening doors to understand the biology of this disease and refine treatment strategies that can improve outcomes for patients. In a retrospective analysis of the phase III study BIG 1-98, postmenopausal women diagnosed with ILC had worse survival outcomes when treated with tamoxifen compared to letrozole [22] These results suggested that the efficacy of commonly administered endocrine treatments could differ between patients with IDC and ILC. Researchers and clinicians needed the patient voice to advocate with funders, institutions and organizations to make the case for more ILC-focused research and to raise awareness of this disease in the broader breast cancer and research community

Role of Patient Advocacy in Lobular Breast Cancer
Launching of the Lobular Breast Cancer Alliance and Global ILC-Focused
Elements of Successful Researcher and Patient Research Advocate Collaboration
Challenge
Findings
Discussion
Conclusions
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