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.