Janet says, "Despite what the official statistics say, metastatic (stage IV) lung cancer is NOT an automatic death sentence. Newer therapies and personalized medicine now offer such patients months or even years of quality time to spend enjoying family, friends, hobbies, even travel and work. Yet insurance companies and doomsday doctors still tell many patients there's no point in pursuing further treatment. I'm an engineer, a writer, and a stage IV lung cancer patient, and I received a letter from my insurance company [ed: Blue Cross Blue Shield of Illinois] saying there was no need for me to have another biopsy because I was going to die anyway. This blog post is my response to that letter."
I was lucky to have enough slides from a 2011 biopsy to have the University of Colorado test my tumor for the relatively new ROS1 genetic mutation in my tumor tissue. Because I tested positive for ROS1, I was able to enter a clinical trial for the targeted therapy crizotinib, a drug which inhibits my ROS1-driven cancer. The trial treatment eliminated both nodules and has given me No Evidence of Disease Status for five months. I am once again able to enjoy traveling, writing, and doing things with my family. If I had not had leftover biopsy slides, an EMN biopsy would have been my only opportunity to obtain enough tissue to test for ROS1. Without that ROS1 trial and crizotinib, I might be dead by now.
Doctors who don’t keep current on new treatment options and then decide a biopsy “is not going to affect long-term health outcomes” for metastatic lung cancer patients are insuring those patients will die sooner rather than later.
That’s not the kind of health insurance I want. Do you?
I write books. My latest is a YA science fiction novel called Homeland (it's the sequel to Little Brother). More books: Rapture of the Nerds (a novel, with Charlie Stross); With a Little Help (short stories); and The Great Big Beautiful Tomorrow (novella and nonfic). I speak all over the place and I tweet and tumble, too.