Story Published:
Jul 6, 2006 at 6:46 PM PST
Story Updated:
Aug 31, 2006 at 7:31 AM PST
SEATTLE - Millions of people now know about Inflammatory Breast Cancer or IBC.
And it's all because of a news story we did back in May on what doctors call the most aggressive form of breast cancer.
Over 10 million downloaded the story and we've heard from hundreds of them in e-mails as the story spread like wildfire across the Internet.
This time, we introduce you to two women who watched our report. One said our story prompted her to take charge of her health, and another has a story of hope.
Seattle's Lani Bradfield watched the video in disbelief.
"I never heard of it before," says Bradfield.
Lani's mother got breast cancer at 46. That's why Lani never misses a mammogram.
She thought she was informed. She didn't know until our report that you don't have to have a lump to have breast cancer; she didn't know IBC is almost never detected on a mammogram. A biopsy will find it.
"To find out after all this time that there is something else out there that has never been shared," says Bradfield, "it's upsetting."
A Rare Form Of Cancer
IBC is rare. The American Cancer Society says only 1 to 3% of all breast cancer is IBC. But the Inflammatory Breast Cancer Research Foundation and the Susan G. Komen Foundation says up to 6% may be IBC.
"That it's unusual, isn't a good reason not to know about it, " insists Seattle's Kathy Gordon, an IBC survivor and advocate.
Kathryn Gordon didn't know what IBC was until she was diagnosed with it.
"I wish someone had scared me early," she says. "I'm still angry my life is threatened by something I never heard of. My physician, who I consider a well-prepared woman, didn't have a clue either."
Kathryn says her family doctor said her symptoms, a red blotchy, swollen breast that was hot to the touch, was a reaction to hormone replacement therapy.
Kathryn went back to work - and forgot about it.
Three months later, a radiologist thought Kathryn's breast looked suspicious. A biopsy confirmed the IBC -- the most aggressive form of breast cancer.
"I told her, 'Don't tell me to go home and get my life in order, 'cause I'm not ready,' " says Gordon.
Never Asked 'Why Me'
She knows her attitude is the only thing she has control over.
"I never asked 'why me?' I just wanted to know how to fight it, " says Gordon.
Lani Bradfield isn't ready either.
"I got years to go; I want to enjoy myself," says Bradfield. She has big retirement plans, namely touring every National Park with her husband in their RV.
While watching our report, Lani wondered about her own health. She has redness on her breast. It's new, and she doesn't know why.
"We're scheduled for a biopsy," says Lani.
She also has what her doctor calls a bug bite, but Lani knows a number of IBC patients were initially told they had a bug bite.
She's pretty confident it's nothing, but she says the IBC story taught her to be proactive.
"I would rather know, I would rather know if I do have something and get it done," she said.
A Lot Of Weapons To Fight IBC
Dr. Carol Van Haelst with Evergreen Medical Center's Cascade Cancer Center says unlike traditional breast cancer, IBC typically grows in sheets -- not a lump. The cancer cells clog blood vessels below the skin.
If caught early it can be treated.
"I think we have a lot of weapons to fight IBC," says an encouraged Dr. Van Haelst.
She says at least a third of IBC patients are what she calls "N.E.D." -- that is, No Evidence of Disease, five years after their diagnosis.
Kathryn Gordon knows all about that.
"I'm currently what they call N-E-D, no evidence of disease, which I think, means no expiration date! Actually, I have no plan to expire!" laughs Gordon.
The best way to catch IBC is to know your breasts and know the symptoms.
Dr. Van Haelst says the best way to detect it is with a biopsy or an MRI.
For More Information:
We have several resources on our main Inflammatory Breast Cancer Information page at www.komotv.com/ibc, including a link to the original video that was spread around the Internet.