Breast cancer online: helping patients navigate the Web
CMAJ 1999;160:239
© 1999 Susan Pinker
If your patient has breast cancer, 3 issues are likely foremost in her thoughts: survival, quality of life and access to information. Any choices and planning decisions she makes will be linked to what she is able to learn about the disease, its course and treatment. As her physician, you will be her primary adviser on these matters. But do you want to be the only source of information?
One in 8 Canadian women will receive a diagnosis of breast cancer in their lifetimes, and a good — and growing — proportion are accustomed to making informed choices. For this latter group, the Internet presents some distinct advantages. Although the sheer volume of cancer-related information on the net can be daunting, it can be a rich resource for the well-equipped navigator. Supplying your breast cancer patients with pertinent Web addresses that you have vetted is akin to recommending a good review article or suggesting a time-tested support group: it's one of many facets of a comprehensive treatment plan.
Only a handful of breast cancer sites zero in quickly on a user's specific questions. One of the best places to start is Steve Dunn's Cancer Information Page (www.cancerguide.org). Dunn, a cancer survivor, maintains an accessible, up-to-date site that explains how to get online information about cancer and why learning about the disease is a solid idea. The basic mechanisms of cancer staging, chemotherapy, side effects and understanding cancer statistics are outlined in literate essays by experts, including Stephen Jay Gould. Dunn also provides a guide to understanding and locating clinical trials, and includes a list of recommended books and a glossary of medical terms. There are also links with other reputable Web sites dealing with specific types of cancer. This is an accessible site designed to help newly diagnosed patients navigate through mountains of information. There are no elaborate graphics or ads, and this makes it easy and quick to use.
The National Cancer Institute's data base (www.nci.nih.gov) should be the next stop on your patients' itinerary. Here the information is organized according to the level of detail the user — health care provider, researcher or patient — requires. There is no danger a patient will be overwhelmed by technical or obscure data. Once on the site, click on Cancernet, then on PDQ. This will reveal current summaries on treatment, prevention, screening and ongoing clinical trials. The patient will be particularly successful if she limits her field of search to specific subtopics, such as "breast cancer" and "stage one," and uses quotation marks around the topic in order to avoid irrelevant links.
Other excellent sources of information include the National Alliance of Breast Cancer Organizations (NABCO) (www.nabco.org) and Breast Cancer Answers — University of Wisconsin (www.medsch.wisc.edu/bca). NABCO is a coalition of several hundred breast cancer organizations, and its Web site provides information about clinical trials (where, why and how), treatment issues and support groups, including some in Canada. Breast Cancer Answers complements this varied menu with a good list of patient questions about different aspects of the disease. The answers can help defuse a patient's anxiety about how to make the most of her limited time with the physician.
The dearth of good Canadian Web sites on breast cancer is surprising. The Canadian Cancer Society (www.cancer.ca) maintains a bilingual, colourfully illustrated page that provides a telephone number and postal address but is not rich in information. However, by clicking on the "research" illustration, the user will connect with the Canadian Breast Cancer Research Initiative, where she can learn what's new in research here. Recent media releases about Canadian research are posted at this site.
Of course, a computer screen is no replacement for psychological counselling or the genuine support available through a physician or hospital-based support groups. But armed with a couple of addresses and basic literacy skills, the breast cancer patient can glean reliable, accurate and up-to-date information about her disease by going online. — Susan Pinker
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