As an interior designer, Pam Newton knows the importance of preparation and attention to detail. So even before a biopsy last year confirmed that she had early-stage breast cancer, she was researching treatment options and interviewing oncologists and surgeons in the greater Washington area, where she lives. Then Newton, 63, learned about a newer method of radiation, involving a shorter course of treatment and special protective measures to shield vulnerable organs from the damaging effects. Trouble was, many of the local doctors she consulted about it after her surgery were hesitant to move away from the standard of care. "But I learned that major cancer centers were doing these different approaches," Newton says--and she promptly joined a clinical trial of the therapy at New York University's Langone Medical Center. After less than a month in New York, she was back under the care of her own oncologist.
Newton discovered what every cancer patient should know: that the country's major cancer centers are a rich resource even for people who can't or don't want to receive all of their care there. That's particularly true of the ones specially recognized by the National Cancer Institute and funded by taxpayers to support research into the disease.
There are a number of ways to take advantage of the expertise concentrated at the big centers, says Mark Fesen, an oncologist in Hutchinson, Kan., and author of Surviving the Cancer System, published earlier this year. One of the simplest: to get a quick "curbside" consultation. "Without your doctor leaving the examination room, he can call down to the sarcoma or brain tumor expert," says Fesen. True, many specialists won't give specific advice about a patient they haven't seen. But an informal exchange of information can be a quick way for your doctor to check whether he's on the right track. Second opinions or in-person consultations are routinely available and often are covered by insurance. If you have a straightforward, early-stage disease with a standard course of treatment, a local second opinion can suffice. But if your case is complicated, advanced, or unusual, a research center can give you the reassurance that your treatment plan is the right one for you.
One way: by reviewing your pathology reports, the biological details of your cancer obtained by biopsy or surgery. The precise nature of the tumor can play a huge role in how cancer is treated, so an expert opinion is helpful in complex cases or where the precise diagnosis can be difficult to pin down, as with leukemia and lymphoma.
You also can tap into the wisdom of an expert tumor board, where specialists from all aspects of cancer care convene to "ask, 'What's the diagnosis? What's the right approach--should treatment be prior to or right after surgery? What about radiation? When do the cosmetic aspects of treatment come in?'" says Robert Figlin, professor and chairman of the department of medical oncology and experimental therapeutics at the City of Hope Comprehensive Cancer Center in Duarte, Calif. The focus, he says, is the "care of the whole person." Such boards regularly discuss second-opinion cases as well as those of people who come for care, says William Carroll, director of NYU's Cancer Institute. Fesen advises, however, that you not agree to a tumor board's suggested treatment plan unless you have spoken face to face with all the specialists essential to your case.
Once you have a diagnosis and a plan, it's often perfectly fine to head back home for your care. But anyone with a complex case may find it worthwhile to seek out cooperative care, in which a tag team of specialists, at home and at the center, works together. Mike Rutter, 39, was diagnosed with advanced melanoma last fall. He had two surgeries in his hometown of Bristol, Tenn., after which his oncologist advised him to seek out experts at the Duke Comprehensive Cancer Center for another operation and an ongoing treatment plan. His Duke oncologist, Amy Abernethy, put Rutter on interferon treatment, which starts out with an intense month of once-daily IV transfusions before easing off to self-administered injections a few times a week. But Rutter didn't have to spend that time at Duke. His local doctor "took the recipe that Duke gave and administered it to me," he says. "It would have been next to impossible to spend 30 days at Duke," he says. "I would have had to stop everything else in my life." Abernethy, who directs Duke's Cancer Care Research Program, says about a third of her patients come intermittently for check-ins and services not available at home, like PET scans. "Frequently, their doctor has them come see me as another pair of eyes," she says. "The local oncologist feels confident carrying out the plan but wants to make sure it's going to work."
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.
Via video. 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's Winship Cancer Institute. 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.
The trial option. 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 (related story, Page 68); experts believe that's one of the reasons progress has lagged in adult disease compared with childhood cancer, where most patients are enrolled in trials. There is an NCI-funded Community Clinical Oncology Program that provides access to trials locally (you can find information at http://dcp.cancer.gov/programs-resources/programs/ccop), 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.
Quality-of-life services, social work, and support groups--the "extras" that can be essential for many cancer patients--are open to people making a one-time or short-term visit. In addition to the radiation treatment she received as part of the NYU trial, Pam Newton took advantage of help finding free housing, regular yoga classes and other mind-body resources, social work and counseling, and even help negotiating with her insurance company. Survivors may also need special care and support; for example, how will a drug they took for breast cancer years ago affect their future health? People who live close to nine cancer centers now studying the best ways to serve survivors (with funding from LiveStrong, the Lance Armstrong Foundation) may be able to connect to the services through their local hospitals, says Andy Miller, an executive vice president at LiveStrong.
Some services are available to any patients or survivors who need them, regardless of where they received treatment. Diagnosed more than a year ago with stage IV lung cancer that has spread to her brain, Nita Carlton, 68, received her care--chemotherapy, radiation, and surgery--close to her home in South Pasadena, Calif. But after hearing a presentation by a lung cancer specialist from City of Hope, a 30-minute drive away in Duarte, she began attending a support group at the hospital once a month. The group is free, and because it's specifically for lung cancer survivors, she can count on getting information that's directly applicable to her own medical and emotional situation. "I have a lot of hands to hold at the group--people who have been through the same mental process of being told the worst, then finding out that there are treatments and you can go on, but figuring out how to go and resume a normal life," says Carlton.
The Anderson Network at M.D. Anderson Cancer Center in Houston offers ways for cancer patients and caregivers to connect and share information through message boards, online ask-the-expert sessions, and on-site conferences. It also matches patients with people who have similar diagnoses in its network of 1,500 current and former patients. Pat Peay, a 53-year-old teacher in Readyville, Tenn., credits the volunteer she was matched with for saving her life. Diagnosed with an extremely rare disorder called essential thrombocythemia, she sought out "information, information, information." M.D. Anderson put her in touch with a woman named Connie who had had the same disease and who advised going to the Mayo Clinic for an experimental drug (Peay did, and it worked). She now talks to other patients herself. "I try to give them the peace of mind that Connie gave to me," she says. In brief, that's the payoff of tapping real experts: the precious sense of being in good hands.
Pat Peay, in Tennessee, got support through M.D. Anderson.
Hobson, Katherine. "How to Get the Very Best Cancer Care; The country's top cancer hospitals are funded by taxpayers--who can call on their experts." U.S. News & World Report 1 Dec. 2009: 52. Academic OneFile. Web. 3 Dec. 2009.
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