The Tyranny of Experts
When entering the complex world of cancer treatment, beware of "I am God" doctors who, however well meaning, are saying do it my way or you die. Stop right there, and find someone else to care for you. That might have prevented the hell that has broken out in Corpus Christi, Texas, because the now 13-year-old cancer-stricken Katie Wernecke and her parents refused doctor's orders. Her oncologist wanted radiation treatments to follow her four cycles of chemotherapy, which appeared to be working. Her parents feared its long-term toxicity, and for months they battled. Finally, social workers from the state Child Protective Services, armed with a court order and a sheriff's posse, chased down the tearful Katie. To assure that she got radiation treatment, they placed her in a foster home away from her parents, brothers, and friends. In custody, Katie's cancer was found to have relapsed. Her doctor quit, and, in one ray of light, Katie is now with a medical team at M. D. Anderson Cancer Center that promises to consider all options.
The agency and the doctor had good intentions. The parents, maybe themselves a handful, had solid information. But the state blundered when it big-footed their custody rights for challenging "standard medical care." Standard-care regimens are not rigid directives chiseled in stone. They are evidence-based guidelines with some give. In Katie's case, the state mistakenly believed that the immediate radiation ordered by her doctor was a government-sanctioned and required treatment, part of the complete standard of care needed for her survival.
Controversy. Most pediatric oncologists would beg to differ. James Nachman, a Hodgkin's expert and professor of pediatrics at the University of Chicago medical school, says standard treatment for advanced Hodgkin's is more like five to eight cycles of chemotherapy. And there's controversy as to whether children showing a complete response to that treatment--particularly after two or four cycles of chemotherapy--get any added benefit from radiation. "I would not hesitate," Nachman says, "to bring in child services to insist on cancer treatment that parents are resisting if it's a matter of life or death, but radiation for this situation is not one of them."
Toxicity concerns about radiation are real and counter some of its benefits. Long term, there is a threefold increase in fatal heart attacks and a 25 percent chance of having breast cancer or another malignancy in 25 years, rising 1 percentage point each year. Patients are pretty good at weighing these trade-offs. Look at the Web. There's an ongoing chat room on the topic of "Radiation or not?" One patient details her remission with six cycles of chemotherapy and says she is just not sure if she should opt for radiation or not. Her doc is giving her the choice. Another chatter tells her to do it; he's a five-year survivor but relapsed with chemo alone. Joe points out that the only consistent thing he has read is that overall survival is the same regardless of whether you get radiation or not. TC summarizes--accurately, I might add--recent findings from a medical journal. Simone's mom says: "We are working through this exact question at the moment. Thanks for asking it for me."
This brings to mind another young Texan and his mom. As almost everyone knows, before he was rich and famous and the winner of even one Tour de France, Lance Armstrong was hit with advanced testicular cancer. In his book It's Not About the Bike, he relates his encounter with an oncologist who said Armstrong's best chance to live was with him: "I'm going to kill you. Every day I'm going to kill you, and then I'm going to bring you back to life." And since one of the standard treatments would tear up his lungs, he should forget about his bike. In despair, Armstrong and his mom went off to Indiana University, where an expert there became his doctor. This doc was willing to work with Armstrong to modify customary care so he could race again. He replaced the lung-damaging drug. He preserved his mental and physical coordination by substituting neurosurgery for standard radiation to wipe out the cancers that spread to his brain. The first doctor focused on survival; the second on making him whole. At the time, Lance Armstrong was 25 years old. Had he been eight years younger when he got sick, sports history could have been changed: The state of Texas might have stepped in to impose on him the tyranny of standard care.
This story appears in the June 27, 2005 print edition of U.S. News & World Report.