Lobular Breast Cancer Alliance (LBCA) Founder Leigh Pate was a public affairs consultant, communications specialist, writer, trained cancer research advocate, and two-time cancer patient. She attended the first International Lobular Breast Cancer Symposium in 2016 and led the formation and growth of the LBCA as its coordinator and director until Spring 2020. Leigh remained active in LBCA and committed to LBCA’s growth and success until we lost her to complications of ovarian cancer on June 25, 2022. 

Leigh was born in Birmingham, Alabama, and grew up in Kingston, North Carolina. While studying at Guilford College, she met Dawn Swanson who said this was when their longtime friendship was forged. “I realized right away I’d met a soul sister. I was a year older and at a different college, and in the early days Leigh may have looked up to me, but from the time she started her professional career in issues advocacy in DC, she became my hero. She was always up for a fight for women’s rights, for the little guy, for the workers, for the environment, health care for all, and on and on. She was a born advocate and had found her mission and direction at Guilford College.”

Leigh’s Lobular Breast Cancer Diagnosis

In 2011 Leigh felt a lump under her arm. She was diagnosed with invasive lobular carcinoma (ILC), which had been missed by mammograms and ultimately was diagnosed with ultrasound. When her doctor told her she had lobular breast cancer, she went home and started an internet search. Leigh said,  “After I got diagnosed with lobular, I couldn’t find good information about it.” Leigh only found a few words about ILC in paragraphs about breast cancer subtypes, and she was annoyed to read that lobular breast cancer was described only as “peculiar” or “interesting.”

She was shocked to learn from her clinicians how little is known about ILC and frustrated and angry to hear that though it is truly different, they did not know enough to treat it any differently from the more common ductal breast cancer. She said lobular patients “were like square pegs squeezed into a round hole.”

With only the standard course of treatment as an option, Leigh moved forward: two surgical lumpectomies, radiation treatment, a course of chemotherapy, and treatment with hormone therapy for several years. At the same time, she threw herself into finding out about ILC with all the energy, inquisitiveness, and perseverance that she applied in her work as an organizer in politics and healthcare.

The First ILC Symposium

In 2016 she attended the first breast cancer symposium devoted to lobular breast cancer, which was sponsored by the University of Pittsburgh. There she connected with other self-described patient advocates with ILC and leading researchers interested in better understanding this understudied disease and enthusiastic about partnering with patients. Leigh remembered being thrilled “not only to learn more about lobular breast cancer, but just also to see what might be possible to try and improve this situation for patients.”

Founding LBCA Advocate Julia Katherine Levine remembers meeting Leigh at that first symposium. Julia commented, “As we were leaving the conference, Leigh, who I hadn’t yet met, was asking the front desk for a cab, and I offered her a ride with myself and Lori Pettiti. This is when Leigh first discussed the need for an advocacy group to promote education and research on ILC and writing a white paper to make it happen.”

The Founding of LBCA

Leigh wrote that white paper with input from Dr. Steffi Oesterreich, Dr. Rachel Jankowitz, and others. A website was soon launched, and Leigh and Dr. Oesterreich together recruited an international advisory board of scientists and clinicians with ILC expertise chaired by Dr. Oesterreich. By the time San Antonio Breast Cancer Symposium (SABCS) 2017 took place, LBCA was born.

LBCA Founding Advocate Janice Axelrod remembers those early days. She said, “We started with a white paper and created a name and logo. Leigh created a structure. It was like starting with a sketch and gradually filling in the details and color. Leigh kept us focused. She listened to us and recognized each of us had different career backgrounds and experiences, but we all could contribute in our unique ways.”

As LBCA’s first coordinator and with the launch of the LBCA website, Leigh helped the organization achieve its first, far-reaching and significant advocacy efforts. The early ILC educational documents created, vetted by the Scientific Advisory Board, and shared on the LBCA website included an ILC Fact Sheet, a description and graphic explaining ILC and how it does not form a lump, and an LBCA brochure to publicize the LBCA website and more resources so that others diagnosed with ILC would not be faced with the void of ILC information that Leigh experienced.

Leigh was sensitive to the diversity of the patient advocates who helped form and shape LBCA and this led her to be careful to ensure that lobular breast cancer at all stages, including metastatic ILC, which she perceived was sometimes ignored, would always have a focus in the LBCA platform and be central to LBCA’s ILC research advocacy efforts.

Leigh also worked hard to develop ways that patients could increase their understanding of breast cancer science so that they could lend their voices to breast cancer research review teams and conferences with confidence while also making others aware of the unique challenges of ILC and the need for more research. This included continually advocating along with Dr. Oessterrich for patients to always be included in the work of researchers to design new ILC studies.

Leigh was a tireless leader and role model in her support of patient advocacy. “Have no fear,” she would advise others with ILC who were hoping to lend their voices to the efforts to promote more ILC research, “You have a right to be at the table, and you have a right to speak up. Your voice and your opinion and your thoughts matter.”

A Lasting Legacy

Tragically, on Leigh’s 50th birthday, the day she received her five-year all-clear from breast cancer, she was diagnosed with a secondary primary cancer – ovarian cancer – which ultimately took her life.  Janice recalls that Leigh was not one to slow down, and Leigh continued to live life to the fullest. “Leigh had amazing energy to travel, present, network, and promote LBCA to the medical community and beyond, while quietly fitting in time to attend to her own medical care. As her illness became more challenging, she recognized that her goal was to make LBCA sustainable beyond her own participation. She had the courage and foresight to look at the future, beyond her own stewardship.”

Among her other accomplishments as a cancer patient advocate, Leigh was a Susan G. Komen Advocate in Science, a Susan G. Komen Scholar, A Fred Hutch Cancer Center patient advocate, and served as a consumer grant reviewer for the Department of Defense Congressionally Mandated Breast Cancer Research Program, the Ovarian Cancer Research Program, and the Conquer Cancer Foundation. In 2021, Leigh was the lead author on a commentary discussing the importance of collaborative efforts between international ILC-focused breast cancer researchers, clinicians and patient advocate leaders titled How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research. 

When once asked what she found most inspiring about her ILC work and that of LBCA, Leigh said, “There is still a long way to go. But it’s gone from literally being nowhere on anybody’s radar, a peculiarity on a shelf –’oh isn’t that interesting’ – to now it’s a thing. And the mere fact that it’s really a thing, that it is worthy of attention, and getting momentum and growing interest out there is huge. I feel like it’s on the radar screen now.  And we have everything we need to make it better for patients.”

Leigh was relentless in her advocacy for lobular breast cancer despite her diagnosis and rough treatments up until the end. In her last efforts she helped people with lobular breast cancer in Europe gather and form advocacy supports and organizations in their own countries while pledging cross-global collaboration. In some of her last words to the lobular breast cancer community in fervent support of continuing ILC advocacy and collaboration Leigh advised, “Lobular breast cancer is a little breast cancer in a big breast cancer world. It is only by working together and working collaboratively that we can continue to make meaningful progress in the next decade so patients will finally benefit from personalized therapies that truly meet the challenges of this disease.”