In August 2023, Jason Mouabbi, MD, assumed the role of chair of the Lobular Breast Cancer Alliance (LBCA) Scientific Advisory Board (SAB). Dr. Mouabbi is assistant professor of breast medical oncology at The University of Texas MD Anderson Cancer Center, Houston, Texas. He has had a research interest focused on highlighting the differences between invasive lobular carcinoma (ILC) and invasive ductal carcinoma (IDC) for the past eight years. He joined the LBCA SAB in early 2021.

The SAB is an internationally renowned group of clinicians and scientists with significant experience studying ILC. They are committed to LBCA’s mission, vision, and goals and are a critical resource for LBCA. They provide strategic guidance and assist with the implementation of LBCA’s planned research advocacy, ILC education, and ILC research grantmaking activities in conjunction with the LBCA Patient Advocate Advisory Board.

LBCA Executive Director Laurie Hutcheson recently asked Dr. Mouabbi about his new role on the SAB.

LH: It has been wonderful working with you as an SAB member for this past year and a half. We are grateful that you were interested in becoming the next SAB chair and look forward to your leadership. Thank you too for agreeing to this interview. How long have you been a practicing oncologist and breast cancer researcher?

JM: I have been a practicing oncologist for the past four years, however my journey with breast cancer research started when I was still a medical resident eight years ago.

LH: When did you start studying, and what drew you to want to study lobular breast cancer?

JM: My journey into the study of lobular breast cancer began during my medical training. While I was a resident, I had a transformative experience during one of my clinical rotations when I encountered a patient with ILC. This patient’s situation left a lasting impact on me. She had been initially diagnosed as a clinical stage I before undergoing surgery, only to discover that she was actually at stage III due to multiple positive lymph nodes found during the procedure.

This experience deeply troubled me, and I began asking questions to my attending physicians in search of an explanation. The response I received was disheartening: “well, that’s lobular, it cannot be detected well on physical exam or imaging.” I couldn’t accept that in our modern healthcare landscape, there was a type of cancer for which we had such limited diagnostic capabilities. This moment was etched into my memory, and I couldn’t ignore the need for more research and understanding in the field of ILC.

Driven by this encounter, I probed into researching lobular breast cancer, only to find that there was indeed little published research on the topic. It became abundantly clear to me that more had to be done to advance our understanding of ILC, and I was determined to be a part of that effort. This pivotal moment in my training marked the beginning of my journey to study lobular breast cancer and work towards improving outcomes for individuals facing this complex and often under-researched disease.

LH: How did you hear about LBCA and what impresses you about our organization?

JM: I learned about LBCA when I first joined MD Anderson where I received tremendous support from my department chair, Dr. Debu Tripathy, and my mentor, Dr. Gabriel Hortobagyi, to pursue my passion and develop expertise in lobular breast cancer. It was during this time that I had the privilege of hearing about LBCA from one of my patients. Intrigued, I visited the LBCA website and was truly astonished by the wealth of information and resources it offered to lobular breast cancer patients. What impressed me most was how closely LBCA’s vision aligned with my own goals and aspirations in the field. I vividly remember the moment I decided to reach out to LBCA. I went to the “contact us” page and sent an email expressing my interest and enthusiasm for the organization’s mission. Shortly thereafter, I had the opportunity to meet you for the first time at the San Antonio Breast Cancer Symposium in 2021. Our shared goal and dedication to make an impact on the lives of individuals dealing with ILC was immediately evident.

LBCA’s commitment to providing valuable resources to patients and its vision for advancing research and awareness perfectly resonated with my own dedication to improving the lives of individuals affected by ILC. It’s this alignment of purpose and the organization’s unwavering commitment that continues to impress me about LBCA, and I’m honored to be part of the collaborative effort.

LH: Why do you think that our mission to raise awareness about ILC and the need for more ILC research is so important?

JM: Raising awareness about ILC and advocating for more ILC research is crucial because it directly addresses critical gaps in our understanding and treatment of this specific form of breast cancer. ILC presents unique challenges that necessitate a focused research effort. First, refining therapies for ILC through dedicated clinical trials is essential to identify the most effective treatment approaches tailored to ILC patients, ultimately improving their outcomes.

Second, enhancing imaging techniques specific to ILC is vital for early detection and accurate staging, as well as for monitoring recurrences and metastases, which are common in ILC cases. Third, advancing targeted therapies demands a deeper comprehension of ILC’s distinct biology, oncogenic pathways, and mechanism of resistance, with the ultimate goal of developing precise treatments that minimize side effects.

Lastly, building essential research tools like ILC-specific models and databases will facilitate comprehensive investigations, bringing us closer to unlocking the mysteries of ILC and improving the lives of those affected by this lesser-known but significant subtype of breast cancer. LBCA’s mission is essential to accelerate progress in these priority areas, ultimately benefiting patients and advancing our fight against ILC.

LH: Why did you agree to become our SAB chair?

JM: I accepted the role of Scientific Advisory Board chair because I am deeply committed to advancing the understanding and treatment of ILC. This mission resonates with me on a personal and professional level. ILC is a complex and often under-researched subtype of breast cancer, and I believe that my expertise and passion for scientific inquiry can contribute significantly to the Alliance’s goals. By assuming this position, I can collaborate with a dedicated team of experts, researchers, and advocates to shape the direction of ILC research, raise awareness, and ultimately improve the lives of individuals affected by this disease. I see it as a privilege and a responsibility to lead efforts aimed at filling critical knowledge gaps, refining therapies, and advancing research, all with the overarching goal of making a meaningful impact in the fight against lobular breast cancer.

LH: Why do you believe it is so important for scientists to work in collaboration with patient advocates and have you ever done so?

JM: I have had the privilege of working with patient advocates in the past, and I consider these collaborations to be incredibly valuable. The partnership between scientists and patient advocates is essential because it brings a holistic perspective to the research and healthcare ecosystem. Patient advocates bring a unique and firsthand understanding of the challenges, needs, and priorities of individuals living with ILC. Their experiences can shed light on aspects of the disease that may not be immediately evident from a purely scientific standpoint.

Working in collaboration with patient advocates fosters a more patient-centered approach to research and healthcare. It ensures that the research agenda is aligned with the real-world concerns of those affected by the disease, which can lead to more relevant and meaningful discoveries. Additionally, patient advocates play a crucial role in raising awareness, advocating for funding, and driving policy changes that benefit the patient community. Their involvement helps bridge the gap between scientific advancements and their practical application, ultimately improving patient outcomes and quality of life. In essence, scientists and patient advocates form a synergistic partnership that accelerates progress and ensures that research efforts are guided by the needs and experiences of those they aim to serve.

LH: Can you comment on how you enjoy/experience the way that LBCA brings the Patient Advocate Advisory Board and the SAB together to plan the research priorities for the coming year?

JM: I find the collaborative approach that LBCA takes in bringing together the Patient Advocate Advisory Board and the SAB to plan research priorities to be truly commendable and effective. This integrated approach reflects a commitment to inclusivity and ensures that the perspectives of both the scientific and patient communities are considered in shaping research directions.

The Patient Advocate Advisory Board brings invaluable insights and real-world experiences of individuals directly impacted by lobular breast cancer. On the other hand, the SAB brings scientific expertise and a deep understanding of the technical aspects of lobular breast cancer research. By working collaboratively with patient advocates, SAB members gain a more comprehensive view of the disease’s challenges and are better equipped to prioritize research that can have a meaningful impact on patients’ lives.

LH: We are aware that there has never been a clinical trial in the United States focusing on metastatic ILC. Can you comment on what you perceive to be the issues in conducting clinical trials on ILC at all stages and what you hope might happen and/or that LBCA might influence to change this? Is there a particular area of ILC research you think it would be good to focus on first?

JM: The absence of clinical trials specifically focusing on metastatic ILC in the United States is a significant concern. There are several key issues that contribute to this gap and need to be addressed to promote ILC-focused research and clinical trials.

1. Underrepresentation in Clinical Trials: Historically, ILC has been underrepresented in breast cancer clinical trials. This underrepresentation makes it challenging to gather enough data to develop targeted therapies and treatment strategies tailored to ILC patients.
2. Biological Complexity: ILC is biologically unique compared to invasive ductal carcinoma (IDC). Its unique characteristics, such as a lack of a cohesive tumor mass and late-stage diagnosis, pose challenges in designing clinical trials that effectively capture the disease’s behavior and response to treatment.
3. Lack of Awareness: ILC is less common than IDC, and there is generally less awareness among researchers, clinicians, and funding agencies about the need for dedicated ILC clinical trials. This lack of awareness can hinder the initiation of such trials.

LBCA can play a pivotal role in addressing these issues and influencing change. By raising awareness about the distinct challenges posed by ILC and advocating for dedicated research funding, LBCA can help pave the way for clinical trials specific to ILC.

As for the areas of ILC research to focus on first, improving early detection and refining therapies for both early-stage and metastatic ILC should be high priorities. Developing reliable screening and imaging tools for early detection can lead to better outcomes by catching the disease at an earlier, more treatable stage. Simultaneously, conducting clinical trials focused on refining ILC therapies, including targeted treatments, can significantly improve patient outcomes.

Furthermore, building a robust database of ILC patient information and biological samples, such as tumor banks, can facilitate both basic and clinical research. It allows for a more comprehensive understanding of ILC’s biology, which can inform the development of targeted therapies and improve the design of future clinical trials.

LH: Can you comment on why it is important to make patients with ILC aware of LBCA and the information that LBCA provides?

JM: It is of paramount importance to make patients with ILC aware of LBCA and the valuable information it provides for several compelling reasons:

1. Empowerment Through Knowledge: Knowledge is empowering, especially when dealing with a challenging and often less understood condition like ILC. By making patients aware of LBCA and its resources, they gain access to a wealth of information about the disease, treatment options, clinical trials, and support networks. This knowledge equips patients to actively participate in their healthcare decisions, ask informed questions, and advocate for the best possible care.
2. Community and Support: LBCA provides a platform for ILC patients to connect with others who share their experiences. This sense of community can be profoundly reassuring and emotionally supportive.
3. Access to Research and Clinical Trials: LBCA is dedicated to advancing research in ILC. By staying informed about the organization, patients can learn about ongoing clinical trials, research findings, and opportunities to participate in studies that may offer innovative treatments or contribute to the understanding of ILC.
4. Advocacy and Awareness: LBCA is actively involved in advocacy efforts to raise awareness about ILC within the medical community, funding agencies, and the general public. When patients are aware of LBCA, they can join these advocacy initiatives, amplifying the collective voice and driving change in research priorities, funding allocation, and treatment approaches.
5. Improving Outcomes: By making patients aware of LBCA and the information it provides, we can work towards better outcomes for individuals with ILC. Informed patients are more likely to seek early diagnosis and appropriate treatment, potentially leading to improved prognosis and quality of life.

LH: Is there anything else you would like to tell us about you or your work in ILC research?

JM: I am deeply passionate and fully committed to advancing the battle against lobular breast cancer. And to that extent I am in the process of activating the first US-based investigator-initiated trial dedicated for metastatic ILC, a milestone that I hope will pave the way for more targeted and effective treatments for individuals facing this challenging stage of the disease. This endeavor aligns perfectly with my mission as the chair of LBCA, as it underscores my dedication to leaving no stone unturned in our quest to make lobular history.

My journey has been greatly influenced by my family, who have always been my source of inspiration and support. Their unwavering encouragement and shared commitment to the cause remind me daily of the importance of the work we do in advancing cancer research.

I am honored to be part of LBCA and to work alongside an incredible team of individuals who share a common goal: to improve the lives of those affected by ILC. Together, we will continue to raise awareness, advocate for research, and drive change to ensure that individuals with ILC receive the best possible care and support.

Thank you for the opportunity to serve as chair, and I look forward to the collective efforts and achievements that lie ahead in our fight against lobular breast cancer.