My ILC Story – Honoring Leigh

The Lobular Breast Cancer Alliance (LBCA) was founded by a group of invasive lobular carcinoma (ILC) advocates and ILC researchers, many of whom first met in 2016 at the inaugural ILC Symposium sponsored by the University of Pittsburgh. One of those attendees was LBCA Founder Leigh Pate, who we lost to complications of ovarian cancer in June 2022.

Next week, the 2023 International ILC Symposium will be held in the city where the seeds of what would become LBCA were sown. With this event taking place, and with LBCA being nearly six years old, it was only fitting to honor Leigh at this special time by sharing her ILC story. Excerpts were taken from an interview with Leigh in 2020.

Honoring Leigh

Imagine the horror of receiving a diagnosis of breast cancer and then hearing that your tumor type is both “peculiar” and “sneaky.” Also imagine learning that it — invasive lobular cancer (ILC) — often eludes mammography screening and is biologically different from the more common ductal type of breast cancer. Yet there is not enough known about ILC to fight it any differently than other types. In 2011, this was the conversation Leigh Pate had with her doctor. Diagnosed with a disease – a breast cancer type – of which she had never heard, the future founder of the Lobular Breast Cancer Alliance (LBCA) was in disbelief.

“I was frustrated and angry,” Leigh said. “So much research about breast cancer all these years, all those fundraisers, all those walkathons, and yet there’s a whole subtype of breast cancer that no one knows much about!”

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.

In 2015, Leigh immersed herself in learning about breast cancer science. In 2016 she attended the first ever breast cancer symposium devoted to lobular breast cancer, sponsored by the University of Pittsburgh. There she connected with other self-described patient advocates with ILC and leading researchers who were interested in better understanding this understudied disease and enthusiastic about partnering with patients. She remembered, “I was thrilled not only to learn more about lobular breast cancer, but also to see what might be possible to try and improve this situation for patients.”

Like Leigh, those she met were dissatisfied with the paucity of research on their cancer and were determined to make their voices heard. With her strong background in working for nonprofits in organizing and issue advocacy, and on a mission to make things better for others diagnosed with ILC, Leigh led the charge. She volunteered to write a letter to researchers and hospitals to promote the cause.

Founding the Lobular Breast Cancer Alliance

The letter turned into a white paper, then a website with a following of a thousand patients and others touched by the disease. Leigh recruited an international board of scientists and clinicians with ILC expertise to provide guidance to the patient advocates developing ILC information to share. By the time of the annual prestigious San Antonio Breast Cancer Symposium in 2017, LBCA had been born.

Thanks to Leigh’s passionate persistence and creative energy, the work of a handful of patient volunteers as determined as she, and dedicated researchers lending their expertise and guidance, by 2019 LBCA was the go-to ILC resource worldwide.

As LBCA has grown from the foundation laid by Leigh and the other patient advocates on the original LBCA steering committee, to becoming the independent, nonprofit charitable organization that it is today, patients and advocates everywhere turn to it for ILC information, to learn about research and clinical trials, to find resources to raise awareness, and to connect with others to learn about research and education advocacy.

In the 12 years since Leigh’s diagnosis, and certainly due in part to the awareness raising efforts and research promotion by LBCA, the number of ILC-focused research studies has grown exponentially, but much remains to be done. Notably, there is still not an effective method with which to screen and detect ILC, and there is still no treatment protocol specifically for ILC.

“Patients with lobular are like a square peg being pounded into a round hole,” Leigh often said, and unfortunately, it is still true. “Being a patient with ILC with no option but to follow treatment protocols for other breast cancer types is hard. Every cancer patient wants to know that the treatment they are receiving is the best possible treatment for them. And every patient needs to have the basic information about their disease to be an informed partner in their self-care.”

In 2020, for health reasons, Leigh felt that she would have to step back from overseeing what she referred to as her “scrappy grassroots startup” as it moved into its next stage. In May 2020, she passed the baton. Stepping down gave her time to continue what she loved doing, directly helping other ILC advocates outside of the US and ILC researchers everywhere to expand their efforts to advocate for and study ILC. She continued to share guidance and insight with LBCA leadership and to provide ongoing financial support to LBCA’s evolution and growth, which continues to this day.

In 2020, Leigh shared her reflections on how much had changed since her 2011 diagnosis – the minutes she spent listening to her doctor annoyingly refer to cancer as “interesting,” the weeks spent searching for scraps of information, the months connecting with fellow patient advocates, and the years building the LBCA. She shared that for her, an essential part of this vibrant legacy was hearing regularly from ILC patients about how thankful they were to find information on ILC and how LBCA had helped them prepare for their treatment choices.

“To me that just says it all,” said Leigh.

Watch a brief tribute video about Leigh and read more about her and what others have shared about Leigh on her tribute page. 

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