What happened, in summary

Nikoo was 42 in 2003 when a normal mammogram missed the cancer her doctor felt during a breast exam. A biopsy confirmed invasive lobular breast cancer, a type that can be difficult to see on standard imaging. The tumor was small, about 0.9 cm, and she was treated with 2 lumpectomies, 30 radiation sessions, and 5 years of tamoxifen. BRCA1/2 testing was negative, and she was told the cancer was unlikely to return. For years, follow-up imaging stayed clear. In January 2022, new GI symptoms made Nikoo feel something was wrong, even after a prior colonoscopy and endoscopy had been normal. An abdominal ultrasound led to urology workups and bladder biopsies that showed inflammation but no clear answer. When symptoms persisted, she pushed for more evaluation and agreed to gynecologic surgery. During abdominal surgery, doctors found invasive lobular breast cancer spread across the abdominal/peritoneal lining, and ovarian cancer was ruled out. Nikoo then sought a lobular breast cancer specialist. Her care included a CDK4 inhibitor, liquid biopsy testing, later treatment guided by a PIK3 mutation, and a Phase 1 clinical trial. As of October 2025, she was 3 years into a Stage IV recurrence and using her experience to push for better recognition of lobular breast cancer.