Inflammatory breast cancer: Living up to its name?

How much should we worry about yet another "silent killer"?

Published August 16, 2006 6:57PM (EDT)

Have you gotten the forwarded e-mail about inflammatory breast cancer? It'll point you to an article and videos by KOMO-TV in Washington state, which covered this type of cancer earlier this summer -- after which the video became the most downloaded in KOMO's history. As far as breast cancer goes, IBC sounds particularly nightmarish: After all the admonishments to women for regular checks, this type neither presents with detectable lumps nor shows up on mammograms. Which, of course, makes it a dream story -- "Silent Killer," natch -- for local news. "They didn't know," intones the KOMO reporter, profiling a series of (legitimately!) angry IBC-afflicted women who weren't aware of the warning signs, and transitioning between each with a weird puff of white smoke. So to what degree is the story itself inflammatory?

Well, what you won't find out unless you watch/read until the end is that, first of all, IBC is relatively rare, accounting for 1 to 6 percent of women with breast cancer. Second, to my mind, there's a matter of perception: Since its warning signs are external -- swelling, redness or dimpling of the breast, for example -- IBC, arguably, makes it easier to notice that something's wrong. Easier, it could be said, than remembering to do your self-exam or to wait around for your mammogram results (that's if you're even of mammogram age).

Problem is, women report that they mistake the symptoms for something far less serious -- an allergic reaction, say -- often just waiting for them to go away while the aggressive cancer spreads. They say they know all about lumps, but no one tells them about "dimples" (a condition called, poetically, or like something that might be good with chocolate, "peau d'orange"). And KOMO says good information is hard to find, citing local and national groups that appear clueless about IBC. (Meanwhile, it took me no fancy reporting skills whatsoever to find info like this PDF. Or this page at the American Cancer Society site, whose whole purpose is to separate Internet rumor about IBC from truth. I also know that women's magazines are likely to include external breast changes on their see-your-doctor lists of curious conditions.)

Of course, the facts about IBC are something women do need to know about, though perhaps sans puffs of white smoke. And clearly even more effort should be made to include, straightforwardly, rashes and peaux d'orange on any "take seriously" lists along with lumps and bumps. Yet oddly, KOMO's recent follow-up video piece on "How the Story Spread So Quickly" -- here, I'll paraphrase: "Because people can forward e-mails all around the world!" -- entirely missed the fact that the story's very proliferation proved its own point, right through the haze of hype: Even allowing for the fact that people forward around all sorts of crazy junk, more women do want and need information about IBC.

By Lynn Harris

Award-winning journalist Lynn Harris is author of the comic novel "Death by Chick Lit" and co-creator of She also writes for the New York Times, Glamour, and many others.

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