Not all medical pros have embraced coordinated care, says Fesen; big centers sometimes want patients all to themselves, while local oncologists may be reluctant to put in the extra effort. But patients can make it happen. Ask about formal or informal relationships with major centers when you're first seeking out an oncologist, and whether he or she would be willing to coordinate care. Was she trained at a big center? Does she still have a mentor there? To whom does she refer tricky cases, and how often? Once you find yourself at a cancer center, ask if services are available on an a la carte basis.
For a small number of people now—and perhaps a lot more in the future—some of the check-ins are happening without anyone traveling anywhere. Barbara Grabbe lives in Hays, Kan., a rural town about a three-hour drive from Kansas City, where her oncologist, Gary Doolittle, practices at the University of Kansas Medical Center. Grabbe, who was diagnosed with breast cancer in 2005, met Doolittle during one of his trips to Hays as part of an outreach service and sometimes still sees him in person. But she also sees him via video monitor, taking advantage of Doolittle's tele-oncology practice. A nurse practitioner acts as Doolittle's hands, wielding an electronic stethoscope that transmits heartbeats and breath sounds to him, hundreds of miles away. Patient and doctor confer through a video connection. "It's just like you were sitting in a room with him," says Grabbe, 68. "He can take my vitals, and then we can sit down and have a good old discussion."
Some people even take on the job of chief coordinator themselves, gathering input from doctors in different places on an ongoing basis and getting it into the hands of whichever one needs it. Take Edward Levitt of Acworth, Ga., for example. He was diagnosed with stage IV lung cancer more than five years ago, after a lump in his leg was revealed to be one of multiple metastasized tumors in his body. When chemotherapy didn't work, Levitt received a then experimental drug, Iressa, which has helped stave off his cancer, and eventually had surgeries for a tumor in the adrenal gland. Levitt has received his care at Emory University. But he and his wife, Linda, also sought out more particular expertise: a doctor at far-off Dana-Farber Cancer Institute in Boston who specializes in tumors with the same gene mutation as Levitt's. They flew to see him and sent tumor samples in case further treatments are developed to help people with his specific type of tumor. That hasn't happened yet, but the Levitts consult with him by phone and E-mail, along with their doctors at Emory, about decisions that come up—whether to go off Iressa and enroll in a trial of a new drug, for example, or to simply add the drug to his existing regimen. The doctors do talk among themselves, too, but the Levitts are the coordinating force. "You need a whole team of doctors," says Linda.
One of the biggest draws of the major centers is the opportunity to be part of a clinical trial. Very few adult cancer patients—about 3 percent—participate in trials; experts believe that's one of the reasons progress has lagged in adult disease compared withchildhood cancer, where most patients are enrolled in trials. There is an NCI-funded Community Clinical Oncology Program that provides access to trials locally, but some experimental treatments are available only at major centers. For now, it's not always possible for trial participants to receive their care at home. "We are encouraging more of that as time goes on," says Linda Weiss, director of NCI's Office of Cancer Centers. Among the benefits: Studies get completed more quickly and probably with a much broader representation of the patient population, she says. "If we want people to participate, we have to think of different ways to help them get to clinical trials or to get clinical trials to them."
Some trials, like lifestyle interventions that involve phone rather than in-person follow-up, are easier to do from a distance, says Abernethy. Other programs may allow you to contribute tissue or information that could be used to help you in the future; at the H. Lee Moffitt Cancer Center and Research Institute, the Total Cancer Care program allows patients to donate data and tissue samples at a host of hospitals and doctors' offices in Florida and other states. If a trial comes up in the future that might help you, the hospital may contact you.