Stage IV HR-Positive Invasive Lobular Carcinoma: Nikoo's Patient Story

What happened, in summary

Nikoo’s first experience with invasive lobular carcinoma began in 2003, when her general practitioner felt hard tissue in her right breast even though she had recently had a clear mammogram. Ultrasound and biopsy found a 0.9 cm lobular breast cancer. She had a lumpectomy, radiation, and 5 years of tamoxifen, and she was told the cancer had been found early. Nineteen years later, new digestive symptoms appeared suddenly. Nikoo developed food sensitivity, nausea, bloating, and weight loss. A prior endoscopy and colonoscopy had been clear, and antacids did not help. After a second opinion, ultrasound and CT showed soft tissue thickening near the distal right ureter, severe hydroureteronephrosis, multiple sclerotic bone findings concerning for metastatic disease, and small-volume ascites. A ureter and bladder biopsy showed inflammation, but the symptoms continued. A gynecological oncologist performed a scope of her lower abdomen, and Nikoo learned that her old breast cancer had metastasized after 19 years. The metastatic lobular breast cancer involved the peritoneum, ascites, and possible bone. Biomarker results were ER-positive, PR-positive, and HER2-negative. Nikoo turned to metastatic ILC support groups and LBCA resources to regain knowledge and control. The experience strengthened her advocacy for careful second opinions and persistence.