E-Comfort, Online Help
One of the many unfair aspects of cancer is that when treatment is finally finished, patients often find that the side effects are replaced with lasting aftereffects that can include fatigue, cognitive issues, depression, and sexual dysfunction. As doctor visits become fewer and farther between, survivors often turn to the Web, Googling for answers, advice, and a compassionate ear in the night.
Remember that all sites are not created equal, says medical oncologist Gisele Sarosy at the National Cancer Institute. The Web is "like a big city. There are good and bad neighborhoods."
The bad ones trade in myths (underwire bras cause breast cancer), peddle false hope for big bucks (exercise programs promising to prevent recurrence), or unintentionally fan fears.
The many good sites offer solid information, sound advice, and the reassurance that you are not alone. Jerry Liebermann, who has been fighting chronic myelogenous leukemia for more than 25 years and works as the volunteer technology director at Gilda's Club in Seattle (www.gildasclub seattle.org), looks for answers at www.cancer.gov (which offers a directory of cancer sites) and www.Medlineplus.gov. "There are some very good resources," he says, "but sometimes the Internet technology world can feed you too much data." Too much can be overwhelming.
Though five-time Tour de France champion Lance Armstrong is a survivor of testicular cancer, the recently launched and still-growing Web site sponsored by his foundation (www.livestrong .org) has stories from survivors of many different cancers, detailing hard-learned lessons and suggestions for coping with and after cancer. Accompanying this is straightforward advice from experts broken into three categories: physical, emotional, and practical.
Many survivors, wanting to consult with others who have walked the difficult walk, turn to chat rooms. "Online, you're just a name," says Mikkael Sekeres, an oncologist and coauthor of Facing Cancer: A Complete Guide for People With Cancer, Their Families, and Caregivers. The anonymity makes it easier to discuss the big issues like sex and death. "Some people are embarrassed to ask those questions in front of family," he says. The Web "gives them the freedom to be a little more candid."
E-chats are too impersonal for Liebermann. "If I was having trouble with lymphedema," he says, "I would want to get together with other people with the same problem and give everyone a big hug afterwards. You can't really do that on the Web."
Hester Hill Schnipper, author of After Breast Cancer: A Common-Sense Guide to Life After Treatment, adds a caveat: "Most chat rooms and bulletin boards are not monitored or professionally facilitated. There is so much misinformation and fear circulating. They may read things that are truly terrifying."
Surf with care and before sunset, Hill Schnipper adds: "The middle of the night is when you are most likely to find something that scares you to death." Night terrors are best weathered "with a cup of herbal tea and a good book." -Marc Silver
This story appears in the April 5, 2004 print edition of U.S. News & World Report.