HOUSTON - Finally, there is hope in the battle against a 'Silent Killer'.
We first reported on Inflammatory Breast Cancer last May. It is the deadliest form of breast cancer.
And now, in part because of our reporting, the world's first IBC clinic is open.
"So today is the day?" I ask Dr. Massimo Cristofanilli, a medical breast oncologist, moments before he makes history.
"Today is the day...I said we have to do it and I wanted to do it," says a proud and anxious Cristofanilli as we walk the halls of the soon-to-be-opened IBC Clinic in Houston, Texas.
His patients call him Doctor "C". And, he made a promise to one of them.
"She wanted me to promise I'd do something for this disease besides just treat it," says Cristofanilli.
That "something" brought IBC survivors and advocates to Houston from across the country.
In between her giddiness and giggles, Mare Kirschenbaum, an IBC advocate, can hardly believe what's about to happen.
"Awesome, awesome, awesome, I'm on a natural high," says Kirschenbaum. Mare's daughter's fight against the silent killer turned Mare into a lifelong IBC advocate. She talks to IBC patients and other advocates daily via e-mail.
"I'm proud to be here, I'm blown away at the history being made here today," said Laney Cummings, who came all the way from London to hear what Dr. C's about to tell the world.
"They're breaking down barriers and building bridges," insists Cummings, who started her own IBC Awareness Web site in the United Kingdom after she was diagnosed with IBC, but couldn't find an IBC survivor or any information on the disease.
Advocates, survivors and their families all crowded into an auditorium at the country's largest cancer hospital: MD Anderson Cancer Center at the University of Texas in Houston. It's now home to the first IBC Clinic.
"I'm very excited for the first time in the world to open the IBC Clinic dedicated only to patients with Inflammatory disease," says Cristofanilli.
For the first time, doctors will work exclusively to find out why this cancer is so lethal. The National Cancer Institute says 1-to-5% of all breast cancer is IBC. The Inflammatory Breast Cancer Research Foundation says it's closer to 6.2% in Caucasians and 10% in African-Americans.
The clinic hopes to develop a blood test to easily detect IBC and find better treatments for this most aggressive breast cancer. According to Cristofanilli, 40 percent of women with IBC will survive five years.
"Many physicians are not exposed to this disease in their lifetime," said Dr. Cristofanilli. He confirms what we reported, that many doctors misdiagnose it as a bug bite or a breast infection.
"Dr C." told me that after our report in May, and our story was spread around the Internet, he was flooded with calls and dozens of women came to see him. At least 14 million people worldwide downloaded our video report from our Web site.
"To have a man like Massimo Cristofanilli say 'because of KOMO-TV, I'm going to open this clinic because I've seen more patients in the last 3 months than I have in all of 2005," says Patti Bradfield.
Patti, from Redmond, is a self-appointed IBC street evangelist. Earlier this year, we caught her on a Kirkland corner approaching any woman who would listen.
"Have you heard of IBC?" she told passers by. "I'm not selling anything, I just want to warn women about this cancer; my daughter has it."
Dr. C was so impressed with Patti's zeal, he asked her to speak at the clinic's opening.
It was Patti's idea to warn women about IBC in a news report.
"When we did this on KOMO, it changed the world," she told the MD Anderson crowd.
And, the Inflammatory Breast Cancer Clinic and Research Program at MD Anderson Cancer Center is proof of that change.
"Best thing that ever happened since my daughter was born," says Patti.
She says the clinic brings hope -- hope for her daughter too. At 37, her daughter Kristine was diagnosed with stage 4 IBC -- the most advanced and deadly stage.
Yet, she never heard of the disease until she was battling it.
"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.
And Audrey Wagner, an IBC Clinic patient, is another of hundreds of women who told me the same thing.
"My doctor I went to didn't know about it," says a stunned Wagner.
When a rash line appeared under Audrey's breast, she thought it was from her bra. Her doctor told her it was nothing to worry about.
IBC symptoms include: a swollen breast, a red rash, itching, a flattened nipple, stabbing pain and an orange-peel like texture
"You never heard of it and when you hear what IBC is, my reaction was - I was deathly afraid," says Wagner.
So was Morgan Welch. Five weeks after her wedding, Morgan learned she was dying from the disease she never heard of.
"We didn't believe the moment would come when there were no more options; nothing left that can be done," says Morgan's husband Mark.
At 24, Morgan died. Dr. Cristofanilli made the correct diagnosis. But 18 months later Morgan became Cristofanilli's youngest patient to succumb to IBC. Her one wish?
"She told them her concerns and not to make the mistake again," says Mark Welch.
"I will keep my promise," insists Dr. Cristofanilli.
One promise to one woman, is now hope for millions.
Seventeen doctors from oncologists to radiotherapists will use a team approach to better understand why IBC is so lethal. They hope to develop a blood test to diagnose IBC, but they can't do it without IBC patients. The clinic's first priority is creating a collection of blood and tissue samples from IBC patients worldwide.
They hope their research will lead to new therapies and treatments for IBC. In a year, Dr. Cristofanilli told me he hopes to open MD Anderson's IBC Clinic to doctors nationwide.
He wants to help educate and make certain all doctors know and recognize the symptoms of IBC.
For More Information:
MD Anderson Cancer Center --
www.mdanderson.orgKOMO's original story on Inflammatory Breast Cancer --
www.komotv.com/ibc