Invasive Lobular Carcinoma: Maureen's Patient Story

What happened, in summary

Maureen is an entomologist who spent her career on university campuses and now lives in Georgia. At the beginning of the COVID epidemic in 2020, she was diagnosed by biopsy with pleomorphic invasive lobular carcinoma. Hospitals were limiting access to diagnostic tests and surgery, and she was afraid to travel to a larger breast cancer center for a second opinion because of virus spread. Drawing on her background in experimental biology, statistics, and genetic research, Maureen became deeply involved in reviewing her own pathology and test reports. She compared her results with breast cancer guidelines and read research journals and clinical trial findings. Through a medical center website, she found the Lobular Breast Cancer Alliance and used its fact sheets, educational videos, and research publication library to better understand ILC. With her doctor’s consultation, Maureen had same-day double mastectomy surgery and completed 30 radiation treatments. Her Breast Cancer Index test results supported taking anti-estrogen therapy for 10 years. As of August 2021, she was focused on staying informed about ILC research and encouraging newly diagnosed patients to find a medical team they trust while also learning enough about lobular breast cancer to advocate for their own care. Her story also shows how scientific literacy and patient education can help during disrupted care.