Progress made in IBC awareness
HOUSTON -- The pictures are hard to look at -- inflamed, swollen breasts. They're red, tender and deadly.
Three years ago - we exposed Inflammatory Breast Cancer or IBC. We named it - The Silent Killer:
Silent, because too many patients who got it never heard of it. A killer, because too many doctors misdiagnosed it.
By the time Carnation's Marilyn Willingham learned she was fighting IBC it was too late.
"She closed her eyes and she was gone," Phil Willingham said when I interviewed him two years ago.
"I had no idea what it was," said "Valerie," an IBC patient whose treatment at M.D. Anderson Cancer Center in Houston left her with no evidence of disease.
The patients who bravely told me their stories got the world's attention. More than 20 million people have downloaded my first special report.
Since then, patients started self-diagnosing and demanding that doctors rule out IBC.
"IBC is an unusual disease, it is a silent killer," M.D. Anderson's Dr. Massimo Cristofanilli told a conference packed with medical professionals in December.
What a difference three years makes.
Cristofanilli, who heads the IBC clinic at Houston's MD Anderson Cancer Center, chaired the first ever IBC consortium: doctors, nurses, researchers, patients and advocates are pooling their resources to treat and beat IBC.
"We started to realize this is really an important moment in IBC research," he said.
KOMO News was asked not only to cover the event in Houston, but to participate.
I opened the conference telling the participants, "For too long IBC has been the Rodney Dangerfield of Breast Cancer, it got no respect."
I had the chance to share our IBC story with researchers from Tunisia, Italy, Belgium, France, and England and doctors from all corners of the U.S.
It's been emotional. Five women I've profiled have died, including Phil Willingham's wife, Marilyn, and Patti Bradfield's daughter, Tina.
When I did my first report on IBC, the National Cancer Institute (NCI) told me only 1 percent of all breast cancer was IBC. NCI now says up to 5 percent of all breast cancer is IBC.
The doctors attending the conference believe the percentage is even higher. To know the real numbers they need to catch the disease earlier.
But there's not enough money to research IBC.
"We have the dedication and the talent...but we always fall short on the funding," lamented Dr. Sofia Merajver with the Breast Cancer Research Foundation at the University of Michigan.
The consortium participants know to beat IBC. They must do something researchers rarely do, share their findings, work collectively and hope that their funding prayers are answered.
"We're getting frustrated with the pace of the progress -- we have lost way too many patients and I'm just worried about women in their 20s or 30s diagnosed today," said Merajver.
The M.D. Anderson Cancer Center has developed a new treatment or protocol for IBC patients that seems to be effective for some patients.
Cristofanilli says they need to develop cell lines, continue to build a tissue database of blood, skin and cancer samples, and launch and share clinical trials. To do that, they desperately need more funding.
He told me the problem is that too many doctors still want to treat IBC the same way they treat other breast cancers even though they're not the same. IBC patients know that. The difference starts with diagnosis.
"I had 13 in all, mammograms, that day, one after another," said Valerie. None of the mammograms detected her IBC.
Unlike traditional breast cancer IBC is rarely detected on a mammogram and rarely present with a lump. A biopsy found Valerie's cancer.
"It's gonna take a change in perception on the part of the health care industry of seeing what's needed to make a quick diagnosis," said Valerie.
Her life and thousands of other IBC patients' lives depend on a worldwide attack on this silent killer.
M.D Anderson Cancer Center opened the world's first IBC clinic two years ago.
IBC symptoms can include: swelling of the breast, redness, tenderness, itching, stabbing pain, inverted nipple, the breast's skin develops an orange peel texture, and some patients describe what looks like an insect bite.
Three years ago - we exposed Inflammatory Breast Cancer or IBC. We named it - The Silent Killer:
Silent, because too many patients who got it never heard of it. A killer, because too many doctors misdiagnosed it.
By the time Carnation's Marilyn Willingham learned she was fighting IBC it was too late.
"She closed her eyes and she was gone," Phil Willingham said when I interviewed him two years ago.
"I had no idea what it was," said "Valerie," an IBC patient whose treatment at M.D. Anderson Cancer Center in Houston left her with no evidence of disease.
The patients who bravely told me their stories got the world's attention. More than 20 million people have downloaded my first special report.
Since then, patients started self-diagnosing and demanding that doctors rule out IBC.
"IBC is an unusual disease, it is a silent killer," M.D. Anderson's Dr. Massimo Cristofanilli told a conference packed with medical professionals in December.
What a difference three years makes.
Cristofanilli, who heads the IBC clinic at Houston's MD Anderson Cancer Center, chaired the first ever IBC consortium: doctors, nurses, researchers, patients and advocates are pooling their resources to treat and beat IBC.
"We started to realize this is really an important moment in IBC research," he said.
KOMO News was asked not only to cover the event in Houston, but to participate.
I opened the conference telling the participants, "For too long IBC has been the Rodney Dangerfield of Breast Cancer, it got no respect."
I had the chance to share our IBC story with researchers from Tunisia, Italy, Belgium, France, and England and doctors from all corners of the U.S.
It's been emotional. Five women I've profiled have died, including Phil Willingham's wife, Marilyn, and Patti Bradfield's daughter, Tina.
When I did my first report on IBC, the National Cancer Institute (NCI) told me only 1 percent of all breast cancer was IBC. NCI now says up to 5 percent of all breast cancer is IBC.
The doctors attending the conference believe the percentage is even higher. To know the real numbers they need to catch the disease earlier.
But there's not enough money to research IBC.
"We have the dedication and the talent...but we always fall short on the funding," lamented Dr. Sofia Merajver with the Breast Cancer Research Foundation at the University of Michigan.
The consortium participants know to beat IBC. They must do something researchers rarely do, share their findings, work collectively and hope that their funding prayers are answered.
"We're getting frustrated with the pace of the progress -- we have lost way too many patients and I'm just worried about women in their 20s or 30s diagnosed today," said Merajver.
The M.D. Anderson Cancer Center has developed a new treatment or protocol for IBC patients that seems to be effective for some patients.
Cristofanilli says they need to develop cell lines, continue to build a tissue database of blood, skin and cancer samples, and launch and share clinical trials. To do that, they desperately need more funding.
He told me the problem is that too many doctors still want to treat IBC the same way they treat other breast cancers even though they're not the same. IBC patients know that. The difference starts with diagnosis.
"I had 13 in all, mammograms, that day, one after another," said Valerie. None of the mammograms detected her IBC.
Unlike traditional breast cancer IBC is rarely detected on a mammogram and rarely present with a lump. A biopsy found Valerie's cancer.
"It's gonna take a change in perception on the part of the health care industry of seeing what's needed to make a quick diagnosis," said Valerie.
Her life and thousands of other IBC patients' lives depend on a worldwide attack on this silent killer.
M.D Anderson Cancer Center opened the world's first IBC clinic two years ago.
IBC symptoms can include: swelling of the breast, redness, tenderness, itching, stabbing pain, inverted nipple, the breast's skin develops an orange peel texture, and some patients describe what looks like an insect bite.