Invasive Lobular Carcinoma: Leigh's Patient Story

What happened, in summary

Leigh was diagnosed with invasive lobular carcinoma in 2011. She was shocked to learn that the cancer could be difficult to see on mammograms and biologically different from the more common ductal subtype, yet did not have a separate treatment approach.

With standard treatment as her available option, Leigh underwent 2 lumpectomies, radiation and chemotherapy, followed by hormone therapy for several years. At the same time, she began searching for better information about lobular breast cancer. Her frustration became a sustained effort to connect patients and researchers.

In 2015, Leigh immersed herself in breast cancer science. The following year, she attended the first symposium dedicated to lobular breast cancer at the University of Pittsburgh. There she met other patient advocates and researchers who shared her concern about the lack of subtype-specific evidence. A letter she volunteered to write grew into a white paper, a website and eventually the Lobular Breast Cancer Alliance. By 2017, the organization had formally taken shape, and by 2019 it had become a widely used international resource.

Leigh stepped back from leading the organization in May 2020 but continued advising advocates and researchers. She died in June 2022 from complications of ovarian cancer. Her breast cancer experience left a lasting legacy through the information, research advocacy and community she helped create for people with lobular breast cancer.