Stage III HR-Positive Invasive Lobular Carcinoma: Katie's Patient Story

What happened, in summary

Katie, a nurse in Cleveland, was 38 when she was diagnosed with Stage III invasive lobular carcinoma in March 2024. She had been referred to a high-risk breast clinic because her mother and 2 sisters had developed breast cancer, but her first mammogram and breast exam were read as normal. Months later, she noticed a small lump. At her next high-risk visit, the mammogram showed calcifications and architectural distortion, and ultrasound led to 3 biopsies: 2 breast areas and 1 lymph node. Pathology showed ILC that was ER-positive, PR-positive, and HER2-negative in both breast biopsies, with spread to the lymph node. MRI showed an 80 mm area of enhancement, and an FES PET showed no disease outside the breast and known nodes. Katie chose a double mastectomy with full axillary lymph node dissection and lymphovenous bypass. Pathology showed a 5.5 cm tumor, extensive LCIS, and 15 positive lymph nodes out of 17 removed. Her treatment plan became clear: dose-dense ACT followed by radiation. As of February 2025, she was a few months past active treatment and learning her new normal on maintenance medications: Verzenio for 2 years, plus Lupron and Letrozole. She also hoped her openness would encourage more women to complete high-risk screening and ask about ILC-specific care.