What happened, in summary

Katie was 56 and living south of London when she shared her experience with invasive lobular carcinoma. Her primary breast cancer had been diagnosed at 50 after mild pain in her right breast. A mammogram did not show the cancer, and the diagnosis was confirmed only by biopsy. At that time, Katie did not know that lobular breast cancer could behave differently from other breast cancers, so she followed the treatment plan recommended by her team. In December 2014, she had a right-side mastectomy with full lymph node clearance, followed by chemotherapy and radiotherapy. Afterward, she took tamoxifen and had annual PET CT scans for monitoring. A clear PET CT scan was reassuring, but in May 2020 she began having stomach problems. Those symptoms led to a diagnosis of metastatic breast cancer, again invasive lobular carcinoma. The cancer had infiltrated the stomach wall in a diffuse pattern rather than forming a visible mass, and small patches were also found in her pelvis and spine. Katie began ribociclib, also called Kisqali, with letrozole. By round 6, endoscopy showed substantial improvement in the stomach, and diffusion MRI showed stable spine metastases. Finding LBCA later helped Katie understand the sneaky behavior of ILC and wish she had known more when first diagnosed.