E-mail inflames fears of aggressive breast cancer

Fast circulating on the Web these days is an e-mail with the subject line: “Please take the time to watch this video! It could save your life.” It has shown up in my In box four times, and because it came from people I know, it didn't go straight into the trash can. The message contains a video clip of a news story from a Seattle TV station. The segment is alarmist, to be sure; entitled “The Silent Killer”, the report comes complete with a soft, sad piano score worthy of daytime drama. Two Canadian cancer experts say the news report is overly fear-inducing but agree nonetheless that women need to learn more about its topic, inflammatory breast cancer.

The most frightening thing about IBC is that it's often mistaken for something far more benign, like a spider bite, and consequently misdiagnosed. For some women, by the time they finally learn that that red mark on their breast is a type of extremely aggressive cancer, it's too late.

The KOMO 4 story focused on the fact that IBC doesn't present as a lump, which is the telltale sign of breast cancer that women have come to fear every time they step into the shower to do a self-exam. The Web-based Inflammatory Breast Cancer Research Foundation has this as its motto: “You don't have to have a lump to have cancer.”

True. But Karen Gelmon, head of the B.C. Cancer Agency's breast-tumour group, says that instructions on how to conduct breast self-exams commonly state—or should state—that women need to look for not just lumps but any changes in their breasts.

“The reality is that the media in particular and some patient-information brochures have been relatively simplistic,” Gelmon, who's also a medical professor at UBC, tells the Georgia Straight. “In essence, we're not saying look for a lump. We're saying look for a change. A change can be a lump; a change can be a nipple pulling in; a change can be redness; a change can be bigger, heavier breasts. Women need to know their bodies.”

Susan Done, a breast-cancer researcher at the Ontario Cancer Institute, has also received the e-mail and describes the Seattle news story as “sensationalistic”. “The story is unnecessarily panicking people,” Done says on the line from Toronto. “It's good in that it's getting to a lot of people—it's good to know that breast cancer isn't always a lump but can present as reddening or swelling in the breast. It can be tender, painful; the skin can be hot. People are always focusing on a lump when you're looking for any changes in the breast.…It's important to educate people, but it's counterproductive if you panic people.”

IBC is rare: it accounts for about five percent of all breast-cancer cases, according to Gelmon. And its rarity is partly to blame for IBC being missed early on. “Because it's so rare, most family doctors have never seen it,” Gelmon says. “I saw a woman yesterday from Winnipeg who wanted a second opinion. She said her breast looked scalded.”

There are horror stories of women who went to their family doctors only to be brushed off, then were diagnosed with IBC much later. Many are posted on the Inflammatory Breast Cancer Research Foundation's Web site (www.ibcresearch.org/). One woman's physician told her to switch laundry detergents to get rid of her rash. Another woman's IBC was initially diagnosed as shingles. Several women were told they had spider bites and were sent home with antibiotics.

According to the Canadian Cancer Society, IBC can spread quickly even in its early stages. Symptoms (see sidebar) can appear suddenly and can resemble those of mastitis, an infection of the breast that commonly occurs during breast-feeding. Mastitis usually causes a fever and is treatable with antibiotics. IBC doesn't typically induce fever and doesn't respond to antibiotics. The most reliable way of diagnosing IBC is with a biopsy, which involves removing a sample of skin and tissue for microscopic analysis.

The Mayo Clinic's Web site (www.mayoclinic.com/) explains that IBC occurs when cancer cells clog the lymphatic vessels in the skin overlying the breast. “The blockage in the lymphatic vessels causes the red, swollen, and dimpled skin that's a classic sign of inflammatory breast cancer,” the U.S. organization's site states. “If you're being treated for a breast infection (mastitis), but your signs and symptoms last longer than a week after starting antibiotics, ask your doctor to do some imaging studies of the breast or to perform a breast biopsy.”

Early diagnosis is vital, since IBC progresses rapidly. Treatment—which usually involves a combination of chemotherapy, radiation, surgery, and hormonal therapy—has improved in recent years, according to the Mayo Clinic. “What was once universally fatal is now a disease that results in half of women diagnosed being alive in five years and one-third of women diagnosed surviving 10 years.” Recurrence rates, however, remain high.

Gelmon notes that 25 percent of breast- cancer cases occur in women under 50, five percent in women under 40. But cases like the one in the Seattle news story, about a 16-year-old girl who died of the disease, are rare, she says.

“The clip did raise awareness, but it scared people,” Gelmon says, adding that despite recent controversy over the efficacy of breast self-exams, it's still important to do them regularly. “Look for changes. And that's not just for women but for men as well. Look for changes in the breast, testicles, bowel movements, coughs.”

Doing so could save your life.

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