SEATTLE - Breast cancer is something women think they know all about: Look for lumps; have mammograms; see our doctors. But none of that will save you from one silent breast cancer killer that women know virtually nothing about.
It's called "inflammatory breast cancer," and it's something every woman must know about.
Nancy Key didn't know.
"I was furious and at the same time, terrified that I was going to die, 'cause I didn't know," she said.
What Marilyn Willingham didn't know, killed her.
"She smiled and took a breath and went to sleep," says Phil Willingham, Marilyn's husband.
And Kristine Turck didn't know.
"It's gonna be a tough fight," says Kristine.
They didn't know there was more than one kind of breast cancer.
They didn't know they could get breast cancer without a lump.
They didn't know a mammogram would not detect this kind of breast cancer.
They didn't know Inflammatory Breast Cancer - or IBC - is the most aggressive form of breast cancer.
They didn't know, until they got it.
Almost Never A Tell-Tale Lump
"How can I have something when I go to the doctor every year, I do self breast exams every month and what is this? Why am I surprised?" asks Nancy.
We've all been taught the same thing when it comes to breast cancer -- we look for a lump. But when it comes to IBC, forget that! You won't find a lump.
"Inflammatory breast cancer almost always presents itself without a lump," says Breast Cancer Specialist Dr. Julie Gralow.
Inflammatory breast cancer appears in sheets of cancer, or what doctors call cancer nests. The cancer clogs breast tissue vessels.
"If I had heard of it prior, I probably would have been more suspect that something was wrong rather than just young and dumb," says Kristine Turck.
Kristine was just 37 when she was diagnosed with IBC, three years away from the recommended age to start mammograms.
Patti Bradfield can never forget the day her daughter Kristine told her.
"I have the kind that I'm gonna die," says Patti Bradfield.
Patti had never heard of IBC either.
"Ignorance is causing death," says Bradfield.
Getting The Word Out
Patti is determined to warn every woman she meets.
"Have you heard of inflammatory breast cancer?" Bradfield asks a woman walking by on a Kirkland street corner. "I'm not trying to sell anything. My daughter has stage 4 and I'm just trying to alert women." She stopped 46 people on that corner, and 42 never heard of IBC.
"Oh my God, I never even heard of it, thank you for the information," says a young mother.
"The interesting thing is most women have never heard about IBC and most physicians heard about it in med school but never have seen a case," says Dr. Gralow.
Nancy and Marilyn's doctors told them they had bug bites on their breasts and prescribed antibiotics. By the time Marilyn was diagnosed, she was stage 4 and the cancer was everywhere.
"I never dealt with stages of cancer, I didn't know there wasn't a stage 5," says a dumfounded Bradfield.
Know The Symptoms
Andi was just 16 when she died from IBC. She was too embarrassed to tell her mother her breast looked funny. It was slightly enlarged and her nipple was inverted -classic IBC symptoms.
Other symptoms include: rapid increase in breast size, redness, skin hot to the touch, persistent itching, an orange peel texture to the breast and thickening of breast tissue.
"It's important to understand your breast, no one knows your breasts better than you," advices Dr. Gralow.
"It doesn't happen very often so there isn't as much awareness about it," says Lynn Hagerman, Executive Director of the Susan G. Komen Foundation's Puget Sound Affiliate. IBC accounts for about 6% of all invasive breast cancer cases.
Lynn Hagerman runs the local chapter of the Susan G. Komen Foundation. With their pink ribbons and messaging heard nationwide, they are the undisputed leader in breast cancer awareness.
In 20 years the foundation's work has helped boost survival rates from 75% to 95%.
"One in 8 women will develop breast cancer in their lifetime," says Hagerman.
Hard To Find IBC Information
She admits with all the emphasis on a lump, inflammatory breast cancer patients may not get enough warning. In fact, it's hard to find information on IBC even on the Komen Web site.
IBC survivors say that and not being included in awareness campaigns makes them feel left out.
"It's all about them, it's not about the good for everyone else," says Turck.
And, survivors tell KOMO 4 when they were diagnosed, they called Cancer Centers and couldn't get help.
So, we called four cancer help lines in Seattle, and 3 out of 4 didn't know about IBC.
"It stands for Inflammatory Breast Cancer, 3 separate words," I tell one center.
Even when I spelled it out, they still didn't know.
"I just want to be sure, I called the resource desk at the Seattle Cancer Care Alliance, is that right?" I asked.
When her own helpline didn't know, that shocked Dr. Gralow.
"Wow... which means we have education of our own staff to do," admits Dr. Gralow.
More Money Going To Research
All the cancer centers do a good job creating breast cancer awareness, but more information on IBC will help to ensure that women know what to look for.
Dr. Gralow assured us that the Seattle Cancer Care Alliance is spending research dollars on IBC. Komen says it is too.
Dr. Gralow is also working with the National Cancer Institute and will participate in the " State of Science" conference to be held next April in Bethesda, Maryland. She says IBC is on the agenda.
Since our initial report, the Susan G. Komen Foundation told KOMO 4 News they need to do a better job with IBC awareness and that they're redesigning their Web site and creating a better search engine to make all information, including IBC, more accessible.
The best way to detect IBC is to know the warning signs and ask for an MRI or a biopsy for detection.
