Invasive Lobular Carcinoma: Susie's's Patient Story

What happened, in summary

Susie became involved with the Lobular Breast Cancer Alliance after her daughter was diagnosed with invasive lobular carcinoma. Her daughter was 42 and living in California when doctors found an 8 cm ILC in the left breast. Her mammogram had been clear the year before, and the family had not been warned that dense breasts might need closer scrutiny. The diagnosis brought a rush of difficult decisions: whether to remove 1 breast or both, whether nipple-sparing surgery was possible, what reconstruction should look like, why a concerning liver finding needed biopsy before chemotherapy, and how family history affected risk. Treatment involved chemotherapy, radiation-related burns, a hysterectomy that pushed her into menopause, and later struggles with side effects from different endocrine therapies. For the family, the illness also raised questions about genetic risk because both grandmothers had breast cancer. As of May 2021, the daughter’s experience had reshaped Susie’s life as well. Susie turned fear and anger into advocacy, joined LBCA work, supported ILC-specific research, and helped build connections among researchers, clinicians, drug companies, and families affected by lobular breast cancer. This caregiver perspective shows how one diagnosis can reshape the whole family.