What happened, in summary

Barb’s invasive lobular breast cancer was found after a routine mammogram in November 2016. She had no symptoms and no family history of cancer, so she did not expect the call-back to become serious. Second-look imaging led to ultrasound and biopsy, which showed invasive lobular cancer. When it was time to choose surgery, Barb chose bilateral mastectomy. The operation lasted 12 hours, partly because the team had to wait for repeated pathology results. The final findings were more advanced than expected: the tumors were about twice as large as doctors had anticipated, there was lymph node involvement, and 5 of 10 lymph nodes were positive. Barb had prepared herself for the possibility that the cancer was not Stage I, but learning it was Stage III was still difficult. After surgery, she had chemotherapy, radiation, and 2 revision surgeries for breast reconstruction. As of December 2020, Barb was in survivorship and had become involved in lobular breast cancer advocacy. She connected with the Lobular Breast Cancer Alliance, attended advocacy training, participated in breast cancer research meetings, and worked to help more people understand how ILC can be underestimated by standard imaging. Her experience also shows why surgical pathology can change the perceived extent of lobular cancer.