Stage IV Invasive Lobular Carcinoma: Karen's Patient Story

What happened, in summary

Karen was 49, athletic, and newly running an American Ninja Warrior gym when her family first entered an oncology clinic in March 2020. Her only obvious symptom had been persistently swollen lymph nodes, and abnormal blood counts had been present for almost 2 years before she was referred for a bone marrow biopsy. Mammograms, including one from the week before, had been clear, and a repeat mammogram and ultrasound also did not find the primary tumor. The bone marrow biopsy revealed de novo Stage IV invasive lobular carcinoma. MRI finally found the breast primary, which was smaller than a fingernail with only tiny areas of invasion. Despite its small size, the cancer had spread through her swollen lymph nodes and much of her bone marrow. Karen began treatment with the same strength and optimism her family knew from travel, coaching, and athletic challenges. She later competed on American Ninja Warrior to share her story and inspire others facing cancer. Her daughter Emily remembered that Karen continued making memories, including biking across the Golden Gate Bridge and rappelling down waterfalls in Hawaii. Karen died in 2024 from a rare metastasis that, like her original tumor, did not appear on imaging. Her family continues to advocate for metastatic ILC research.