Honoring LBCA Founding Advocate Julia K. Levine

About Julia

Julia Katherine Levine was a dedicated volunteer and co-founder of LBCA. From almost the moment of her diagnosis of de novo metastatic lobular breast cancer in 2012 Julia worked tirelessly in her free time on all of the LBCA activities and materials developed to raise awareness of invasive lobular carcinoma (ILC) and promote more needed ILC research. Julia immersed herself in learning about the science of lobular breast cancer and lobular metastases and in developing new and better ways to share this knowledge with others. She was committed to helping ensure that the LBCA publication library, which has since been named for her, was updated regularly and carefully curated with the input of the LBCA scientific advisory board members to be sure it always contains the most current and relevant publications about ILC research. Julia also helped maintain LBCA’s clinical trials page and was instrumental in working with sister breast cancer organizations on ensuring that clinical trial search tools for breast cancer patients incorporated information specifically regarding whether or not trials were enrolling patients with ILC.

Though sometimes camera shy, Julia was always a willing, articulate and compassionate spokesperson for LBCA and a fervent educator about its resources for patients. She participated in numerous videos and webinar presentations on different aspects of ILC and always was sure to stress the importance of ILC researcher/patient dialogue. She assisted with every ILC patient experience survey LBCA issued and the write up and presentation of the results. She also
worked with many ILC researchers on their ILC research applications and on the development of important manuscripts on ILC challenges. Julia was the reason LBCA was able to collaborate with two partner breast cancer organizations last year and launch two virtual support groups for individuals with mILC – the first in the world. Almost everyone who has had or is living with metastatic ILC who has met and/or worked with Julia has noted how helpful, caring and inspiring they always found her. Julia has truly touched everyone and everything to do with LBCA from designing the metastatic ILC information webpages, LBCA’s logo and representing LBCA on the Metastatic Breast Cancer Alliance. She always helped keep recognition of the lack of metastatic ILC research and clinical trials in the forefront of our minds and was the inspiration for the metastatic lobular breast cancer research grant solicitation LBCA has developed and issued in partnership with KOMEN.

We already so greatly miss Julia’s warm, sweet, forceful energy. We have pledged to emulate her in our unending pursuit of more research into metastatic lobular breast cancer research and the identification of a way to eradicate it. See below to read what others have said about Julia, see links to videos that she has been a
part of and a link to the obituary that her family has posted.

Read Julia’s obituary here.

Julia's Contributions to LBCA

We credit LBCA’s existence to Julia for having introduced LBCA’s founding leader Leigh Pate to other ILC patient advocates in 2016. Together, along with a handful of others with ILC, they drafted the first whitepaper about Invasive Lobular Carcinoma (ILC) that led to the launch of the LBCA website in 2017.

Julia has been the curator of the LBCA publication library from the outset. Once or twice a year she would collect and review with our scientific advisory board members the newest published studies to vet them for our library, categorize them and give them to us to upload and update the library. She co-authored all of the LBCA patient experience posters and abstracts that we have done from surveys of patients since 2017:

Lobular breast cancer alliance -Advocates advancing research, screening, treatment and follow-up care for lobular breast disease (2017)
Survey of LBCA-Sponsored Website Confirms Value, Identifies Unmet Information Needs (2019)
Imaging and invasive lobular carcinoma: a survey study conducted by the Lobular Breast CancerAlliance (2021)
Lobular Breast Cancer Alliance Survey of Individuals with Metastatic Invasive Lobular Carcinoma (2022)
Surgery for Invasive Lobular Carcinoma: A Patient Experience Survey from the Lobular Breast Cancer Alliance (2023)
Invasive Lobular Breast Cancer and Surveillance: A Survey Study by the Lobular Breast Cancer Alliance (2025) (Submitted to ASCO for poster )

In addition, she has launched, founded and helped with many other important LBCA initiatives including:

She has been a co-author on two of the papers LBCA advocates co-authored
She has helped maintain and update our ILC clinical trials page
She has been a member of our ILC research committee designing, writing and conducting ILC research activities
She has been on the planning committees for and moderated panels on the past two ILC Symposiums and maintained the ILC Patient advocate websites
She moderated LBCA’s patient advocate FB group for three years
She maintained and regularly updated a list of ILC researchers and clinicians around the world, in collaboration with with Susie MacDonald
She was a key representative for LBCA to the MBC Alliance-MBC Here all year and Metastatic trials search
She launched the LBCA mILC Working Group and helped found the first ever mILC Virtual Support Group
She has been in many of the educational videos LBCA has made.

ILC Videos Featuring Julia

ILC Scientists Remember Julia

LBCA Scientific Advisory Board Founder Dr. Steffi Oesterrich remembers Julia

I met Julia Levine at the first ILC Symposium in September 2016 in Pittsburgh. She was one of a number of patients with ILC who had traveled a long distance to attend the meeting, eager to learn and see how she could contribute. She was immediately drawn in and soon became a key member of the founding group that launched LBCA, helping to get it off the ground. She would attend meetings in 2017-2019 that were dedicated to defining the mission and goals of LBCA, and how to achieve those.

Early on, Julia focused on the design and maintenance of the LBCA website and played a major role in gathering and curating research articles on ILC. She dedicated countless hours to volunteering for LBCA, and there is no doubt that her contributions were instrumental in shaping the organization into what it is today. After being diagnosed with metastatic ILC, Julia poured her heart into advocating for more research on the disease. She never hesitated to ask difficult questions and challenge researchers and physicians. She was sharp, insightful, and no one could fool her. Often, she was the only person in the room living with metastatic ILC—but that never fazed her. On the contrary, she felt a deep responsibility to represent the disease and ensure it was acknowledged and discussed. Julia was incredibly persistent. As researchers, we always knew that if Julia was involved in a project, she would fully commit. She never signed on to something lightly—if she agreed to participate in a research project, she gave it her all. She expected her ideas to be seriously considered and, when appropriate, included. She brought passion and energy to every effort, traveling long distances to ensure that metastatic ILC had a voice at major breast cancer meetings—like the Metastatic Breast Cancer Research Conference in Utah in 2022. Julia will be deeply missed by many. Her energy, commitment, and passion have played a vital role in advancing awareness and research for ILC.

Steffi Oesterreich, PhD , LBCA Scientific Advisory Board Founder, Professor, University of Pittsburgh and Co-Director of the Womens Cancer Research Center, UPMC Hillman Cancer Center

Lobular advocates - Birth of LBCA, Pittsburgh 2016

Although I met Julia several years ago in the context of “clinician researcher” and “patient advocate,” Julia and I became so much more than that. We became not just collaborators, but true friends, and the impact of losing her runs deep both in my life and the entire lobular community. In the days since her passing, I’ve found myself reading through text conversations she and I had over the years. Julia was so funny, so smart, and pushed forward with fortitude. She inspired those around her, and for me personally, she changed the direction of my research. I look back through those messages and see her sending me articles to read, telling me about her ideas for clinical trials, asking me to come join her at the pool at conferences, reminding me to review articles for the lobular library she created, giving me advice, and asking about my life. Some of her messages make me laugh, and others, especially those more recent messages, bring tears to my eyes. It was Julia who told me about the barriers that “unmeasurable disease” created for those living with metastatic ILC—which led to a research study that she and I published together, and ultimately to the creation of the PLUMB study. Julia spent countless hours over the last several years working on PLUMB. The knowledge that she acquired through her illness was stunning—Julia was remarkable. Knowing her was such a privilege, and I am grateful for the time I had with her. I can only hope to honor her memory and make her proud by continuing the work that was so very important to her.

Dr. Rita Mukhtar, LBCS Scientific Advisory Board Member, Associate Professor of Clinical Surgery and Associate Program Director, General Surgery at the University of California, SF

Julia was a true tour de force in advocating for research into metastatic ILC. I was fortunate to speak alongside her at both the ILC Symposium in Pittsburgh in 2023 and in Leuven in 2024. During these meetings, Julia participated as a patient advocate in sessions on metastatic ILC, adeptly providing the patient perspective. Her clinical case and personal journey demonstrated her desire to help others through participation in clinical trials. My final interactions with Julia again highlighted her passion and dedication to enabling research into metastatic ILC. At the Leuven symposium, our group identified key challenges, including potential misdiagnosis and late diagnosis due to the unusual metastatic spread of ILC. Julia had experienced these challenges in her own journey and helped us develop a survey asking patients about their diagnosis and history of ILC. We will dedicate the outcomes and report of this survey to Julia.

Dr. Adrian Lee, Professor, University of Pittsburgh and Director, Women’s Cancer Research Center

"I had the honor of caring for Julia for the past few years and to the very end and I can attest to her strength, determination and incredible spirit. Yes I’m heartbroken, in tears writing this and thinking of how much I loved her. …”

“I am so heartbroken - there is an urgent need for more research in ILC metastasis prevention and ILC metastases treatment.”

"I met Julia a few times and she was such a thoughtful and brave woman."

“We will miss her and her positive energy greatly!”

“I am so saddened by this. I have known her since the 2016 ILC symposia. I will miss her spirited presence. I am extra motivated to advocate for more research towards better ILC treatment.”

“I am so sorry to hear this news. We should honor her memory and the memory of all those we lost by redoubling our efforts to stamp out this type of breast cancer.”

“She was such a wonderful and amazing person. She will be missed.”

ILC Patient Advocates Remember Julia

Julia was a force—small in stature but mighty in presence. When we first met in 2016, neither of us knew another lobular patient. Information was scarce, and social media wasn’t the powerhouse of connection it is today. But we both saw a post on breastcancer.org from a Pittsburgh lobular patient, Heather, about the first-ever International Lobular Breast Cancer Symposium. Separately, we each reached out to her and said, I’d like to come. That introduction led Julia and me to travel together to what would be our first scientific meeting—an experience that would shape our advocacy journey.

The story of LBCA has been told many times, but what people may not realize is how difficult those early days were. It took an enormous amount of time, faith, and persistence. Countless meetings, brainstorming sessions, and unwavering dedication tested each of us. But we rose to the challenge—and Julia was the most steadfast of us all. Her impact on LBCA and lobular research is profound and lasting. Julia loved deeply—her family, her garden, and the friendships she nurtured. I am grateful for her friendship. Lori Petitti, LBCA Patient Advocate Advisory Board member

“I met Julia as a passionate, informed and always questioning patient advocate with metastatic ILC when we worked together on the International ILC Symposium GlobMob group. Her dynamism, energy and drive were incredible and she was inspirational as an advocate who could drive ideas for new research, such as the recent paper on the exclusion of ILC patients in clinical trials. We will remember and continue her work through our on-going advocacy, and I commit to driving greater understanding and research into mILC in her memory.” Claire Turner Lobular UK

“I am so sorry for this big loss. We all need to wipe our tears and carry on with ILC advocacy. I am sure Julia would be very thankful.” Esther Geven, Stichting Lobulair Borstkanker