Brenda Bryant learned she had breast cancer while she was sitting alone in her car in the parking lot of her grandson's day care center. It was early evening on a Friday two years ago, and her surgeon called to tell her the results of a biopsy. "He just gave me my results and that was it," says Bryant, who lives in Northern Virginia. "It was like there was this big knot in my throat. I was lost, and I didn't know who to go to. I just started going crazy."
Searching on the Internet for more information about the disease, Bryant found the telephone number of the National Cancer Institute's Cancer Information Service (1 800-4-CANCER, or 1-800-422-6237). The woman who answered told her about local support groups and medical specialists in her area and shared her own story of having breast cancer. "The person on the other line was really comforting," Bryant says. "It made me feel like I might have some hope."
Despite its 35-year history, the NCI's free service remains under the radar to many. The helpline handles about 78,000 calls a year, in English as well as in Spanish, from patients, family members, and others who have questions about different types of cancer. By contrast, in 2007, some 11.7 million Americans were living with the disease.
The service is especially underused in ethnic minority communities, according to Dr. Nancy Burke, a researcher at the University of California, San Francisco. "There's an issue of awareness, and there's also the comfort issue of seeking information over the phone," she says. "But once we introduce people to it, they love it. Cancer patients are often overwhelmed by information, and the line can help them sort through it."
The cancer line fields a wide variety of queries, including what to expect after different diagnoses; what to ask doctors; where to get help with financial, legal and transportation problems that might interfere with treatment; the benefits and side effects of different treatment options; and what clinical trials are available for different diagnoses.
Callers are encouraged to share as many details as possible about the exact type and stage of their cancer, so that the staff can tailor the information they provide. "But if they don't know this, we can help them formulate questions they can take to their doctor," says Mary Anne Bright, a former oncology nurse who directs the program. "We will spend as much time with somebody as they need."
Unlike many other toll-free helplines, "we're not a pharmaceutical company, and we're not collecting donations," Bright adds. "We're all about reporting the most accurate and up-to-date information about cancer and the results of research in a way that people can understand."
The phone line is open Monday through Friday, from eight a.m. to eight p.m. Eastern time. Callers aren't asked for their name, unless they want to receive printed material in the mail, and only their area codes are collected. They are asked some basic demographic questions at the end of the call, but can choose not to answer, and "it won't have an impact on how we deliver our service," Bright says.
The Cancer Information Service also handles questions by email and by instant messaging. Recently, the line has been answering more questions about where to get financial help, how to pay for treatment, and where to get free or low-cost screening tests, such as mammograms.
Burke says one unexpected benefit of the call line is the confidence it instills in patients navigating the medical system. "Many people don't feel entitled to getting good service," she says. "It was empowering for people to feel they were going into their appointment with questions to ask and information to discuss with their doctor."
Brenda Bryant called the line a second time, a month after her initial breast cancer diagnosis. Even though she had insurance, she was worried that she wouldn't be able to afford her treatment, and she also wanted information about a clinical trial that her cancer specialist was pushing. She ended up deciding to go with the standard treatment for her type of cancer, and she reports that she is now doing well.
"They just gave me a lot of information on different services, and they didn't promote any treatment or trial," she says. "I just felt that it was a good resource."
A similar version of this article originally appeared on the website of New America Media.
Follow Erin N. Marcus, M.D. on Twitter: www.twitter.com/ErinNMarcusMD