[I was just rereading this NYT article and wanted to share it with those who may have missed it. –KOB]
RONI CARYN RABIN
Published: Tuesday, January 18, 2011 at 1:00 a.m.
Last Modified: Wednesday, January 19, 2011 at 5:17 a.m.
…Stage 4 breast cancer can be treated, but it is considered incurable. Depending on the type of tumor, patients may live for many years — working, raising children, starting nonprofit foundations, doing yoga and even running half-marathons.
But theirs are not pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.
“This woman had just been diagnosed,” Dr. Hebert said of her support-group encounter, “and I couldn’t bring myself to tell her: ‘I have it in my bones. I have it in several parts of my body. My treatment is never going to end.’
“It was a horrible moment,” she went on. “I had nothing in common with them. I was what scared them.”
While perceptions of the disease may have changed in recent years, the number of deaths it causes has remained fairly static, said Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston.
“All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve,” he said. “While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.”
Many patients keep the spread of their disease private, and Mrs. Edwards’s 2007 announcement that her cancer had become “incurable” was an inspiration to many — it was also why her death was such a blow.
“She put a face on the disease,” Dr. Hebert said. “I could explain my situation to people.