Stage III Invasive Lobular Carcinoma: Famke's Survivor Story

What happened, in summary

Famke was 39 when she noticed that an area in her right breast felt firmer and had a defined edge. It was not a distinct lump, and she nearly dismissed the accompanying pain after reading that breast pain usually was not a cancer symptom. Her gynecologist suspected a fibroadenoma but referred her for imaging because of her age.

The mammogram and first ultrasound did not show anything concerning. Famke continued to insist that the breast felt different. After examining the area herself, the radiologist took another careful look with ultrasound and found a suspicious area. A biopsy confirmed invasive lobular carcinoma.

The cancer initially appeared to be early and limited to the breast, so Famke proceeded with a double mastectomy. Final pathology changed that understanding: the tumor measured more than 8 cm, lymph nodes contained cancer and the margins were not clear. The diagnosis was stage 3, and she needed additional surgery, chemotherapy and radiation. She also began long-term hormone therapy.

Famke worked in oncology drug research, but becoming a patient changed how she understood cancer information and uncertainty. She sought a second opinion from a lobular specialist and used scientific and patient-advocacy resources to learn about late recurrence and metastatic patterns. At her 5-year cancer anniversary, she remained on hormone therapy and continued sharing information with younger survivors and non-oncology clinicians.