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April 2, 2001
Online at Any Hour: The Value of Breast Cancer Support Groups
By Sharon W. Linsker

illustration: Barbara Shone

Marsha Brekke, 44, has been there. She knows what it means to hear "You have a 7-centimeter breast tumor." And she's survived a mastectomy, a bone marrow harvest, and several rounds of chemotherapy and radiation. Now, four years later, she goes online to answer the questions of patients, family members, and friends who are struggling with breast cancer issues.

This Minneapolis single parent says that she clicks on message boards and chat rooms to answer myriad questions: "How do you adjust to having no hair? to being sexually active after a mastectomy? How do you broach the subject of breast cancer with a date?"

"I provide information their doctors could never come close to," says Brekke, who is part of a rapidly growing group that turns to breast cancer online support networks to ask questions and express their fears -- and to provide answers and give encouragement.

The past decade has seen a great increase in chat rooms and message boards devoted to breast cancer. These sites are run by nonprofit groups, large corporations, and even individuals reaching out to other breast cancer survivors. And whereas face-to-face support groups may be difficult for some women to join, particularly those living in nonurban areas, online groups are open to anyone with access to a computer.

Forming a sisterhood

Among the first of these groups was CompuServe's Cancer Forum, begun in 1988. Debra Freisleben, a member since 1990, has been the forum librarian and assistant since 1996. She's quick to note that the forum creates a strong sense of community, with members getting to know one another and checking on women they haven't heard from in a while.

"Online support groups provide a connection like no other," says Gloria J. McMullen, 47, a breast cancer survivor who has started her own AOL Hometown page with a section for messages. "What's wonderful about online chat is that a woman can express her fears and concerns, even when she's awake and fearful at 3 a.m. She can pour her heart out -- and can speak freely without being interrupted, as might happen in a face-to-face group," adds McMullen, a resident of West Covina, California.

Pat R., age 47, from Dallas, another breast cancer survivor, says that going to online chat rooms and message boards helped her get through a major decision, choosing the reconstructive surgery that was right for her following a mastectomy. She finally chose to have a TRAM flap (an operation that uses a flap of the patient's abdominal tissue to build a breast) after speaking with many other women online. The good news? After her 12-hour surgery in August, she's back at work -- and has maintained close online friendships with two women who had also had a TRAM. That all three women live in different parts of the United States doesn't matter at all.

And breast cancer survivors are not the only ones to benefit from online support. Family members and friends often participate as well. Edward Madara, director of the American Self-Help Clearinghouse at St. Clare's Hospital, in Denville, New Jersey, points out that caregivers are the "hidden patients." But now, Madara explains, "thanks to the Internet, you can -- without leaving your family member or friend -- visit an online support group anytime of day or night to learn how to better support both your loved one and yourself."

Challenging the healthcare system

Breast cancer survivors participate in online chat rooms and messages boards for different reasons, but for most, the initial click comes when they are newly diagnosed and are desperate for information. Take the case of Johanna Byrne, 52, from Mineral Point, Wisconsin. Facing a double mastectomy last June, Byrne says that she read everything she could about her condition. She was especially concerned about the side effects of chemotherapy because she'd had a childhood heart problem. So Byrne went online to ask other women about alternatives to the drugs prescribed by her physician. Like many computer-savvy patients, she talked about what she'd learned online with her doctor -- who agreed to switch medications.

Armed with information, women like Byrne are questioning their doctors' decisions. The result is that many patients are now taking a far more active role in their treatment than ever before.

"When it comes to some topics, women are far better informed than their doctors. Such knowledge can be a wonderful source of ammunition for the consumer to hold up to healthcare providers," says Elizabeth Mullen, founder and president of Women's Information Network Against Breast Cancer, or WIN ABC. Indeed, Mullen believes that the Internet is a tool for improving the quality of health care in the United States.

Madara concurs, explaining that online support groups capitalize on what the Internet is all about: shared knowledge. There is "collective wisdom gained when patients pool their experiences, practical coping skills, and information on needed resources," he explains.

Saving lives

And while the evidence for the success of online support groups is mostly anecdotal, there have been some promising empirical studies. "Only limited research has been done on the efficacy of online self-help groups, in part because of ethical concerns for group members' privacy," says Madara. "But one such study, reported in Cancer Practice in 1997, surveyed 54 participants in CompuServe's Cancer Forum. Researchers Jayne I. Fernsler and Laura J. Manchester, both RNs, found that the vast majority of respondents rated the online support group as very helpful, especially for the group's ability to lessen their sense of isolation, obtain needed information, and give them a more active role in treatment. What's more, 84 percent said that group participation was helpful in controlling pain or other symptoms."

John Ross, the Cancer Forum administrator, says he doesn't need formal studies to know that his site has saved lives. Whether it's a response to posting from a woman whose husband tells her not to bother about her symptoms or a question about a physician who provides the wrong information, the advice on CompuServe from professional medical advisors and breast cancer survivors has led to crucial interventions.

What about the occasionally misinformed comment from those who go online at breast cancer sites? At CompuServe, says Ross, "We dispel far more myths than we post. And if incorrect points appear, other participants are quick to jump in and correct the errors."

Of course, as with all online information, women should use common sense to determine what's accurate and what's useful. One of the best safeguards against misleading information is to consult sites run by reputable organizations, be skeptical about magical cures, and look for evidence of all claims. And a woman should always check with her doctor before pursuing any course of treatment.

Related links:

Rx.magazine feature story: Putting Up a Good Fight

Rx.magazine feature story: A Test of Time: Breast Cancer Awareness and Treatment Through the Ages

Rx.magazine feature story: A Path of Her Own: One Woman's Journey with Breast Cancer Featured Section: National Breast Cancer Awareness Month features and information

Outside link: Information on breast cancer from the American Cancer Society

Outside link: The Association of Cancer Online Resources and the Women's Information Network Against Breast Cancer offer online support groups for breast cancer

Outside link: The American Self-Help Clearinghouse lists many other online and face-to-face groups, including special interest sites, such as those addressing the needs of men with breast cancer or of African-American women with the disease

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