Abstract P5-17-01: Lobular breast cancer alliance - Advocates advancing research, screening, treatment and follow-up care for lobular breast disease
Authors: Petitti L , Axelrod J , Campbell-Kotler M , Frank E , Jaremek J , Levine J , McWilliams M , Migyanka F , Ryan N , Viggiano E , Metzger-Filho O , Oesterreich S , Pate L 
Published: February 2018

Abstract
Introduction
Thirty patient advocates attended the First International Invasive Lobular Breast Cancer Symposium in 2016 at the University of Pittsburgh Cancer Center. The conference underscored that invasive lobular breast cancer (ILC) and other lobular pathologies are understudied. Specifically:
ILC is the sixth most prevalent cancer of women and the second most frequently diagnosed histological subtype of breast cancer impacting up to 34,000 patients a year in the US.
ILC is a molecularly distinct breast cancer with unique subtypes and variants with differences in presentation and behavior, including physical findings of thickening and a tendency to metastasize to unique locations.
While ILC is frequently associated with a good initial prognosis, recent analysis suggests that long-term outcomes of ILC may be worse than those stage-matched to ductal breast cancer.
Current imaging tools are less reliable for early detection of lobular disease and detection of distant recurrence.
Standard of care chemotherapy and endocrine therapies may have different effectiveness applied to ILC and IDC.
Challenges
Growing interest in ILC research requires improved methods to identify, communicate with and link patients with ILC to clinical trials and research. Advocates with advanced science training are needed as partners for research proposals and grant reviews.
Lobular breast cancer is under-represented in key meetings and literature. Encouraging opportunities to share ILC research as agenda topics and fostering collaborations between researchers, clinicians and advocates can accelerate progress and refine clinical practices for screening, treatment and follow-up.
Patients living with ILC lack a central on-line source of lobular breast cancer information and resources. This information gap is a barrier to help patients recognize signs of lobular breast cancer's unique presentation and metastatic behaviors.
Results
The Lobular Breast Cancer Alliance (LBCA) was formed by patient advocates who attended the First International ILC Symposium in response to advocate-identified opportunities to advance research, refine treatments and enhance patient education.
LBCA's mission is to bridge patients, clinicians and researchers to increase our knowledge of lobular breast disease and promote research that leads to advancements in prevention, diagnosis, treatment and patient follow-up care.
Conclusions
LBCA is driving an increased awareness of lobular breast cancer with specific goals:
Build a clinically accurate, patient centered website devoted to lobular breast cancer at www.LobularBreastCancer.org.
Elevate lobular research and foster opportunities for researcher, advocate and clinician collaborations at prominent conferences and meetings.
Identify barriers to conduct research on ILC and metastasis and link patients and advocates to ILC tumor research and clinical trials.
Initiate peer-to-peer clinician outreach strategy through targeted literature, meetings and education services to share information on ILC presentation, metastatic patterns and screening and treatment challenges of patients with ILC.
Build partnerships with existing breast cancer organizations to integrate ILC into existing information resources and work on common goals.
Citation Format: Petitti L, Axelrod J, Campbell-Kotler M, Frank E, Jaremek J, Levine J, McWilliams M, Migyanka F, Ryan N, Viggiano E, Metzger-Filho O, Oesterreich S, Pate L. Lobular breast cancer alliance - Advocates advancing research, screening, treatment and follow-up care for lobular breast disease [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P5-17-01.