by LBCA Executive Director Laurie Hutcheson
On June 25, 2022, the invasive lobular carcinoma (ILC) community of patients and researchers lost a passionate, inspirational leader and friend, Leigh Pate, to complications of ovarian cancer. Leigh was the Lobular Breast Cancer Alliance’s (LBCA) lead founder and a fervent ILC patient advocate. She also shared an ILC diagnosis and treatment path that is all too familiar to many of us when she was diagnosed with ILC in 2011. But it is how she lived her life after her diagnosis that made her our superhero.
As so many of us have experienced, Leigh’s ILC had been missed by mammograms and ultimately was felt by her and diagnosed with ultrasound. Leigh threw herself into finding out about her unique cancer subtype with all the energy, inquisitiveness, and perseverance that she applied in her work in political campaigns and healthcare. She has said that she found only 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 recounted being 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.” Reflecting on how much research there had been into breast cancer over so many years, yet with so little focus on ILC, she said it was “just wrong, wrong, wrong!!’” Leigh set out to change this.
Already having a strong background in organizing and issue advocacy, Leigh went into training specifically for breast cancer advocacy and attended the first ILC symposium sponsored by the University of Pittsburgh. There she connected with other women with ILC who were similarly dissatisfied with the state of knowledge and paucity of research. They determined together to make their voices heard. Leigh volunteered to write a letter from the group to researchers and hospitals to promote more research of lobular cancer and ILC-specific treatment protocols.
The letter turned into a white paper, which led to the launch in 2017 of LBCA and the establishment of the website, lobularbreastcancer.org, which acknowledged lobular breast cancer as a specific, separate disease. Leigh was able to recruit distinguished scientists and researchers to the organization’s advisory board, and in 2018 she obtained a fiscal sponsor, which enabled LBCA to raise funds in support of its mission as a charity.
Thanks to Leigh’s vision and fervor, LBCA, which she referred to as “a scrappy grassroots start up,” has become a vibrant nonprofit organization promoting patient advocacy, education, and ILC research.
I met Leigh in person in 2018. It was soon after my own ILC diagnosis and treatment, when I had the good fortune to stumble upon the LBCA website. It was obvious that Leigh was a shining star leading a vital organization. She was passionate, driven, well-spoken, and had a clear plan. I knew right away I wanted to be a part of what she and the other founding ILC patient advocates were creating, and I signed on.
Leigh called out everything that was wrong with the lack of knowledge about and research focus on ILC. She was inspiring in how she turned anger and frustration into energy and action. She was an amazing connector who wrote beautifully and was skilled in using all of the various social media platforms to get ILC information messaging out there. She was also a perfectionist, ensuring that anything LBCA produced met the highest literary and scientific standards.
In the Summer of 2019, we created a strategic plan to grow LBCA’s capacity and reach for education, advocacy, and research promotion. Around that time, when Leigh perceived her ovarian cancer was progressing, she asked me to take over. Despite the progression of her illness, she became my incredible and astonishingly tireless tutor in breast cancer advocacy. She continued to inspire me and others to be better advocates for ILC research until her last days. Leigh’s death is a tremendous loss. LBCA and I are committed to sustaining and growing her legacy.
In Sadness and Gratitude,
Please stay tuned later this summer for a tribute page to Leigh on our website.