Patients can depend on the information in most breast cancer Web sites, according to a study published in the journal Cancer. Researchers at the University of Texas looked at 343 Web sites and found only 41 inaccurate statements on 18 of the sites, meaning a 5.2 percent rate of error. Information about complementary and alternative medicine (CAM), they said, was 15.6 times more likely to be inaccurate than information on Western medicine. They tested accuracy by asking clinician-reviewers to assess content.
There is not much online about hormone-negative-breast cancer, but it is good to know that what is there is likely to be on target. And the coverage is increasing—most likely because of increased research on negative.
I found the Web invaluable when I was diagnosed. Apparently being a bit of an egghead, I used the cancer sites as a starting point, then dug into the research itself for a deeper perspective. Few folks want to read medical journals, though, and the sites I have listed on the left do an excellent job of presenting up-to-date research in accessible language. Research articles were especially important in my quest for information about hormone-negative. I especially like breastcancer.org’s research updates
My advice on using Web information:
• Use multiple sites for multiple perspectives. This will help guard against accuracy problems—you’ll see inconsistencies and know which information might be suspect. This is true of all media—you’re more likely to get a broader base of information if you have a broad base of media use. Depending too much on television can be especially problematic, as TV reporters have only a minute or two to decode complex information—and you have no opportunity to go back and reread the data for clarity.
• Don’t look to cancer chat rooms for information. These are OK for support, perhaps, but it’s too easy for a person to share her misinformation in these arenas.
• Don’t forget good old-fashioned books. In an earlier post, I recommended my favorites .
• Talk to your doctor or nurse about questions you have, and don’t let them dismiss your research or your concerns. They are medical experts, but it is your body and your life. If you don’t feel your doctor is on the right track, get another opinion. This is too important an issue to leave to somebody you might not entirely trust or who does not answer your questions with clarity and respect. My favorite doctor—my radiation oncologist—even drew me a picture of how radiation works.