Stage I HR-Positive Invasive Lobular Carcinoma: Janelle's Patient Story

What happened, in summary

Janelle was 41 and living near Baltimore when a routine mammogram in May 2024 showed increased calcifications in her right breast. She had known about a right-breast lump since age 17, when ultrasound called it a benign cyst, and she had started mammograms earlier because her mother had ovarian cancer at 40. After the May 2024 mammogram, Janelle had a stereotactic biopsy in June. She first saw the words “breast cancer” in a MyChart message, without stage or prognosis information until the next day. Her official diagnosis was Stage IA lobular carcinoma that was ER-positive, PR-positive, and HER2-negative. Because she works in research, more information helped her move from fear toward planning. What troubled her was how little ILC-specific information she was given at diagnosis. She searched for research studies at her own institution, then found Lobular Breast Cancer Alliance resources and began learning how ILC differs from more common breast cancers. As a 40-year-old Black woman at diagnosis, she also noticed that much of the available data focused on older white women. As of December 2024, Janelle wanted her experience to help diversify ILC research and make reliable subtype-specific information easier for future patients to find quickly. Her message was that information can turn panic into a plan.