"0.4%" — Sasha

Sasha's cancer was never supposed to be found when it was.Invasive lobular carcinoma — the second most common form of breast cancer — grows not in a lump, but in sheets and lines of cells. It only shows up on mammograms about thirty percent of the time. Sasha's first mammogram had come back clear. It was a chance ultrasound, performed alongside an unrelated finding, that caught a shadow no one was looking for. A needle core biopsy confirmed it: invasive lobular carcinoma, grade one.Then came the MRI. What had initially looked like 1.5 cm turned out to be 6.5 cm. And the pathology revealed something rarer still — Sasha was HER2-positive, making their cancer triple-positive ILC. That combination represents just 0.4% of all breast cancers. There is only one specialist in the country who studies it.What followed was six rounds of chemotherapy, a planned bilateral mastectomy, and a year of treatment that Sasha has approached with a scientist's precision, a community organizer's sense of equity, and a parent's fierce honesty.In this conversation, Sasha and Dr. Randi Paynter discuss:-- Why invasive lobular carcinoma is so frequently missed — and what that means for outcomes-- What it's like to be a 0.4% patient navigating a treatment protocol designed for a different cancer-- The real cost of chemo — $55,000 per session, $2,000 per shot — and what happens to people without good insurance-- How Kaiser Permanente's integrated care model changed Sasha's experience of diagnosis and treatment-- The social model of disability — and why cancer is one of its most clarifying examples-- What actually helps when someone you love is going through treatment (and what doesn't)-- Giving a 13-year-old clippers, green hair dye, and a moment of control in a scary year-- How Sasha has used public storytelling — through CaringBridge and beyond — to process, inform, and connectSasha is a non-binary business owner and parent living in San Francisco, California. Their episode is one of the most clear-eyed and generous conversations you will hear about what cancer asks of us — and what we deserve to ask of the systems meant to care for us.-- Go to ChangedByCancer.com for show notes and episode linksResources mentioned:-- Lobular Breast Cancer Alliance — lobularbreastcancer.org-- CaringBridge — caringbridge.org-- The Emperor of All Maladies by Siddhartha Mukherjee-- The Cancer-Fighting Kitchen by Rebecca KatzChanged By Cancer is hosted by Dr. Randi Paynter, a cancer epidemiologist. This podcast shares personal experiences and systemic issues in healthcare. It is not medical advice. Please consult your own medical team for health-related decisions.