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

What happened, in summary

Tanya was 44 when she was diagnosed in 2016 with Stage IIIA invasive lobular carcinoma in her left breast. She had noticed a painful lump for about 1 year, but her first concern was dismissed because she had no family history and was told breast cancer was not painful. When she pushed for testing, an ultrasound was read as clear, but a mammogram and review against the ultrasound finally identified the tumor. Biopsy showed grade 1 ILC that was ER-positive, PR-positive, and HER2-negative. The tumor measured about 10 cm by 4 cm by 4 cm. Tanya had chemotherapy first to shrink it, followed by a double radical mastectomy with immediate DIEP reconstruction and axillary node dissection, then radiation. She took Tamoxifen for 8 years, then tried an AI for 3 months before stopping because she could not tolerate it. In November 2024, she noticed a change in her left reconstructed breast. A January biopsy began a new phase of care, and in March 2025 she had chest wall debridement/mastectomy with ALT flap repair for angiosarcoma in the radiated reconstructed breast. As of May 2025, she was recovering after a second surgery for skin graft coverage. Her story also reflects the long tail of treatment decisions, side effects, and self-advocacy after ILC.