It’s not often an urban legend has the potential to save lives.
Two months ago, an e-mail began circulating. In a breathless style typical of most e-mail chain letters, it urged recipients to “please forward this to your wives, girlfriends, mothers, sisters, every woman you know! If we don’t share it, some people may never hear about this until it is too late.
“It’s one of the most aggressive forms of breast cancer known but most aren’t aware of it including physicians. I’ve no idea how common or rare it is but something to absolutely be aware of. Three of four cancer groups / help lines had never heard of it.”
The writer urged a look-see at a TV segment broadcast on station KOMO in Washington state and provided a Web link.
A quick check at the urban legends debunking site, www.snopes.com, is usually followed by a quicker jab at the “delete” key.
But Snopes.com confirmed the e-mail was true. It provided its own link to the TV broadcast about Inflammatory Breast Cancer, which the station had placed on its Web site.
From early May, when the segment aired, through early last week, the station recorded over 12 million people had downloaded the video in which experts talk about an aggressive breast cancer that tends to manifest itself in “sheets” or “nests” of cancerous cells, instead of a tumorous lump.
“I was stunned that more than 12 million people downloaded the video and now know about a disease,” said Michelle Esteban, the KOMO-TV reporter who worked on the story. “We’re really proud of how many people we’ve heard from. (We’ve gotten) countless e-mails from women saying they never heard of IBC, had been diagnosed and felt alone, or said the report prompted them to be proactive about their health care.”
Flood of interest
Hopefully, the numbers mean that millions of women learned that not all breast cancers can be detected by mammogram, and that waiting until age 40 to begin monthly self-examinations of their breasts can be a deadly mistake.
The video that triggered an e-mail flood can be accessed at www.komotv.com / ibc. A warning: the video shows some graphic photos of breasts with symptoms of IBC.
The Susan G. Komen Breast Cancer Foundation, the National Cancer Institute, the American Cancer Society, The Oncologist and the Inflammatory Breast Research Foundation, all with Web sites, offer solid, online information about IBC.
“IBC is the most aggressive manifestation of primary breast carcinoma, with the clinical and biological characteristics of a rapidly proliferating disease,” according to The Oncologist. “It is relatively rare, with an incidence of only 1 to 6 percent in the U.S. African Americans have a higher incidence of IBC than do Caucasians and other ethnic groups.”
It added the incidence in cases has more than doubled since 1975.
“It’s a tough one. It doesn’t carry a good prognosis.” said Denise O’Neill, a breast cancer survivor who founded S.O.S. – Survivors Offering Support – at the Breast Center at Anne Arundel Medical Center. “The women are battling for their lives because it’s the hardest to treat.”
Dr. Cynthia Drogula, a breast surgeon at the Aiello Breast Center at Baltimore Washington Medical Center said, “I see IBC a couple of times a year. Some doctors go their whole career and never see a case.”
Self exams key
IBC is not a new disease. Awareness of it peaks every five or six years, she said.
“Most physicians are aware of it, but some might confuse IBC with an infection and it doesn’t get treated right away,” said Dr. Drogula.
The main message she wants women to understand is that regular self-breast exams are important.
“What’s normal for you?” the surgeon asked. “If it’s not normal, go to a doctor right away. The patient usually makes the discovery, not the physician.
“If a woman sees changes, an alarming increase in size, a big rash, it does merit an investigation. When you find a lump, I usually say ‘Wait a menstrual cycle and then come in if it doesn’t go away.’ With IBC, come in right away.”
And while mammograms are an important tool in detecting breast cancer tumors, they can miss IBC.
“A breast with IBC can look normal on a mammogram, but the cancer can grow quickly. Very quickly. And it’s very lethal,” said Dr. Drogula. “With most breast cancer, survival can be counted in years or decades; with IBC, survival used to be just months. Now treatments have improved to where women can live one or two years beyond diagnosis.”
Very aggressive
The cancer, she said, tends to occur in women younger than the usual breast cancer victim.
“It cuts across all demographics. It spreads rapidly, it’s very disfiguring and they go down the tubes so fast,” she said. “IBC is the breast cancer that is most likely to spread to the other breast, it crosses through the skin.”
The Inflammatory Breast Cancer Research Foundation Web site states the median age at time of diagnosis of IBC is 52 years, versus 62 for other breast cancers. Some victims have been as young as 12. Men and pregnant women also have been documented with IBC.
“IBC cells are different, they’re extraordinarily aggressive,” said Dr. Drogula. “They get into the lymphatic channels of the breasts. They get into the blood vessels beneath the skin.”
“I haven’t seen a cure yet,” said Dr. Drogula.
But there are treatments to prolong an IBC victim’s life, hopefully until a new cure or treatment is developed. She noted there are different chemotherapy routines that an oncologist will try. A radical mastectomy or double mastectomy is usually recommended, followed by radiation therapy.
“We use experimental protocols where we can and switch to second- and third-line drugs,” she said.
“Women of all ages need to check their breasts once a month. Most women should routinely do the self-exam seven days after the start of their period. The breast is less lumpy then.
“A woman needs to do it both lying down, in bed, and standing up, like in the shower. She needs to examine all areas of her breast including the armpit and the area under the nipple.
“The Take Home,” Dr. Drogula said, “is that, thankfully, it’s a rare cancer. I’m so happy it’s not common. Readers need to be aware that it – and other breast cancers – exist.”
