Lobular Breast Cancer Alliance: Changing the Conversation on Invasive Lobular Carcinoma

Oct 27, 2021

By Susan P. Sandler, Conquer Cancer

In 2018, Laurie Burgess Hutcheson celebrated her 60th birthday and was looking forward to launching a new consulting business after a flourishing career in health care management. She did not realize how much her life was about to change when she went for a routine screening mammogram. The radiologist noted a suspicious spot, and a second mammogram, ultrasound, and biopsy followed. Ms. Hutcheson was devastated to receive the call informing her of the diagnosis of invasive lobular carcinoma (ILC; also known as lobular breast cancer).
“I was dumbfounded, distraught, and in disbelief. I had no family history. I got screened regularly. There was no lump!” Ms. Hutcheson reflected. “My surgeon explained that 10% to 15% of those diagnosed with breast cancer have lobular breast cancer, which, though less common than the more prevalent ductal breast cancer, is still a relatively common cancer in women compared to, say, ovarian cancer. It is also referred to as the sneaky cancer since it does not always form a detectable lump. My tumor had apparently been growing for years before they saw it!”
According to the American Cancer Society, an estimated 43,700 new cases of ILC will be diagnosed in 2021. Yet, despite its prevalence, a very small fraction of breast cancer research is devoted to ILC. When Ms. Hutcheson was diagnosed, there were few sources of reliable information specific to ILC for patients to access. She was heartened, however, to discover a website with a wealth of information on the latest research on ILC developed by a then newly forming organization, the Lobular Breast Cancer Alliance (LBCA). 
While there has been much progress made in treatments for breast cancers overall, advances specific to ILC have not kept pace. “Treatment for ILC is currently the same as treatment for ductal carcinoma even though lobular breast cancer behaves differently in many ways,” explained Ms. Hutcheson. “For example, lobular cancer tends to be diagnosed at stage II or later (on average), with more cases of de novo metastatic cancer. LBCA is working to change the conversation. There needs to be more research in how treatment may need to differ.”
LBCA’s origins began following a 2016 ILC symposium organized by Steffi Oesterreich, PhD, for researchers and patients from around the world. Alarmed by the lack of ILC research, a group of patient advocates led by Leigh Pate, LBCA’s founder and first director, gathered at the symposium to discuss next steps. This led to the formation of a scientific advisory group and the informative website that captured Ms. Hutcheson’s attention after her diagnosis. After volunteering as a fundraiser for LBCA, Ms. Hutcheson was invited to become the organization’s first executive director in May 2020.
In its brief history, LBCA’s accomplishments have been significant. They include an ever-expanding, scientifically vetted website (lobularbreastcancer.org), collaboration with other advocate groups and the European Lobular Breast Cancer Consortium to sponsor two ILC symposiums, and co-authoring an article in the journal Cancers, “How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research.”1
LBCA’s laser-focused pursuit of research to increase knowledge and improve outcomes for ILC led to the organization’s funding of the 2021 Conquer Cancer – Lobular Breast Cancer Alliance Young Investigator Award (YIA), as well as a 2-year research fellowship award through the American Association for Cancer Research (AACR). 
The YIA marks Conquer Cancer’s first award specifically earmarked for ILC research. The recipient, David Lim, MDCM, MEd, PhD, of Women’s College Hospital in Toronto, launched his project, “The characterization and impact of patient, tumour, and treatment disparities on survival outcomes for invasive lobular breast cancer: a population-based observational cohort study,” on August 1, 2021. Utilizing a healthcare database, Dr. Lim aims to create one of the largest cohorts of patients with lobular breast cancer ever studied and identify factors that impact the survival of patients with ILC, including patient factors (such as age, ethnicity, tumor status, and treatment), and treatment center characteristics.
“I am profoundly honored to receive the inaugural Young Investigator Award for ILC Research,” said Dr. Lim. “This early-career development award will support my research interest in characterizing disparities in lobular breast cancer care and treatment and, importantly, how these disparities affect outcomes for patients with ILC. I am truly grateful to Conquer Cancer, the ASCO Foundation, and the Lobular Breast Cancer Alliance for supporting my early research career. I look forward to sharing our funded research findings at the 2022 and 2023 ASCO Annual Meetings.”
Dr. Lim acknowledged his scientific mentors and institutional support at Women’s College Hospital and Women’s College Research Institute, including Kelly Metcalfe, RN, PhD, FCAHS, FAAN; Steven Narod, MD, FRCPC, FRSC; and David Urbach, MD, MSc, FRCSC, FACS; as well as Christine McKay, an LBCA member and patient advocate involved on the team, and collaborators at ICES Ontario. Without their support, Dr. Lim said, “this endeavor would not be possible.”
“We are grateful to be able to make this ILC-focused grant a reality,” Ms. Hutcheson said. “Being able to fund ILC research directly for the first time is an important and historic achievement for LBCA. We are thrilled that we can directly contribute to advancing knowledge of ILC and are eager to see the new research that the grants we fund with our partners will stimulate.” 
“Conquer Cancer welcomes LBCA’s support of the first-ever YIA specific to ILC research,” said Nancy R. Daly, MS, MPH, Conquer Cancer CEO. “We are proud to collaborate with one of the leading organizations in the world working to improve treatments and outcomes for patients with lobular breast cancer.”
Find additional information about the Lobular Breast Cancer Alliance and learn more about Conquer Cancer
1. Pate L, Desmedt C, Metzger O, et al. How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research. Cancers (Basel). 2021;13:3094.
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