KOMO News Special Report: Inflammatory Breast Cancer
The Silent Killer: Inflammatory Breast Cancer (Original story seen on the Web in May, 2006)
Nov. 15: First IBC Clinic Opens in Houston
July 6th IBC Update: A Story Of Hope
Aug. 1 Update: The Word is Getting Out:
SEATTLE - Breast cancer is something women think they know all about: Look for lumps; have mammograms; see our doctors.
By Michelle Esteban
Nov. 15: First IBC Clinic Opens in Houston
July 6th IBC Update: A Story Of Hope
Aug. 1 Update: The Word is Getting Out:
EARLIER STORIES COVERED ON KOMO NEWS
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.
IBC Update For Feb. 27, 2007: Local IBC advocate set to make history once again
Special Update March 14: New Mexico passes IBC bill into law
By Michelle Esteban
REDMOND - A local mother's passion and a KOMO 4 News special report are making history.
Lawmakers in New Mexico saw our special on Inflammatory Breast Cancer. And, they heard from that mom in the report, whose daughter has IBC.
Now, they want to help fight a killer disease with a $3 million promise they're about to make.
"To the honorable state of New Mexico Legislature, my name is Patti Bradfield, my daughter has stage four IBC," reads Redmond's Patti Bradfield.
The same letter she reads to me, was read Monday before lawmakers in New Mexico.
"My baby girl is dying and you all hold a piece of the puzzle to find answers to this disease."
Four years ago, Patti's daughter Tina was diagnosed with Inflammatory Breast Cancer. It is the most lethal and aggressive form of breast cancer.
The National Cancer Institute says at least 5 percent of all breast cancer is IBC. No one knows how to prevent or cure it, and most women never heard of it until they got it.
Tina's cancer is stage 4 - there is no stage 5.
"Some of this is going to come too late for so many women," Bradfield cries into her hands.
On Monday, the lawmakers in Santa Fe also saw our special report on IBC, which we aired last May.
New Mexico Senator Tim Jennings asked them to support legislation to earmark $3.2 million for IBC research. His wife Patty has breast cancer.
"We showed the video from KOMO to legislators and it had a really terrific impact on them," says Patty Jennings.
The money would team the University of New Mexico with doctors in Houston, Texas, which is now home to the world's first IBC Clinic at the M.D. Anderson Medical Center.
We were there last October when it opened; it's the only place where patients and doctors from all over the world are working together on IBC research, full-time.
"They're going to be working together on their research to fund tissue sampling from around the world," says Jennings.
The Clinic needs IBC patients, tissue, blood and DNA samples. Once collected, the clinic's founder says the goal is to gain a better understanding of what causes IBC, develop a diagnostic blood test and imaging guidelines, and create new, more effective treatments.
"Doing this collaborative approach is a first," insists Jennings.
In March, New Mexico lawmakers approved the bill to give the money to IBC research. New Mexico governor Bill Richardson signed the bill into law on March 14th.
"This isn't a state issue, isn't a funding issue, this is a humanity issue," says Patti Bradfield.
Now there is momentum to encourage Washington lawmakers to follow suit.
"If New Mexico can do it, we can do it too," insists Bradfield, who dreams of testifying before lawmakers in every state. She says she would have gone to New Mexico to testify in person, but couldn't afford the plane fare.
She works full time on IBC advocacy -- it's all volunteer work. She's hoping others will join the fight and help her get to Washington, D.C., where she hopes to meet with Senator Ted Kennedy.
She's already met with Washington Senator Patty Murray. Bradfield thinks Kennedy could help influence the National Cancer Institute to help fund IBC research on a national level. Until she raises the money to get to the "other Washington", she's using her letter writing skills to make a difference.
IBC can be hard to detect. It forms in sheets in the breast tissue and often there's no lump. It's almost never caught on a mammogram. The best way to detect it is a biopsy. Some of the tell tale signs include: a swollen breast, red, stabbing pain, sometimes tiny spot looks like a bug bite.
For More Information:
IBC Update For Nov. 15, 2006: First IBC Clinic opens in Houston
By Michelle Esteban
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.org
IBC Update For July 6, 2006: A Story Of Hope
By Michelle Esteban
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.
IBC Follow Up For Aug. 1, 2006: The Word Is Getting Out There
By Michelle Esteban
Nearly one month ago we devoted all of our newscasts to talk about inflammatory breast cancer or IBC.
We were surprised to learn that so many IBC patients had never heard of this most aggressive form of breast cancer until they were diagnosed.
Since our July broadcast, we've heard from hundreds of you.
"I never heard anything about IBC!"
But, Dana Slayton is now an expert on inflammatory breast cancer. She saw our story in July and called our phone panel.
"I talked to Allison...she was very reassuring," Slayton said. "She's a survivor and cancer free for several years. She's a mom, just a sweetheart, she's wonderful, I'm so glad she gave me reassurance."
Dana is learning everything she can about the cancer. She now knows you don't have to have a lump to have IBC.
She's worried she may have it.
"When I went to doctor I said, 'I saw this on KOMO; I have changes.' They said, 'You should have come a lot sooner,' " says Slayton.
Her doctor found two lumps and thinks they're cysts. But Dana is scheduled for an MRI to be sure.
"I'd rather know and actually do something about it -- if I have cancer I want to start treating it today and know today," insists Slayton.
Dana has other IBC symptoms. For months, she ignored changes in her breasts. When her breast swelled and started hurting, she shrugged it off as she'd never heard of pain with breast cancer.
And then her breast tissue thickened and was slightly discolored.
"I just never mentioned it (to my doctor) because I was embarrassed."
The most common IBC symptoms include: rapid increase in breast size in one breast, redness, skin hot to the touch, an inverted nipple, persistent itching, and thickening of tissue and stabbing pain.
Dana says a month ago, she wasn't comfortable saying the word breast in public. Now she'll talk to anyone who will listen.
"I thought if I do have breast cancer and I'm dying, then my death won't be for nothing and if I don't then my life still won't be for nothing," she says.
Bottom line? Any change in your breast - call your doctor.
Doctors says IBC is uncommon. The Inflammatory Breast Cancer Research Foundation says 6.2% of all breast cancer patients have IBC. The American Cancer Society says it's closer to 4%.
IBC is rarely detected on a mammogram. Breast surgeons recommend a biopsy and an MRI.
How KOMO's IBC Story Spread On the Web
By Matt Markovich
It used to be that a local TV news story was just that -- local.
When KOMO first broadcast its Inflammatory Breast Cancer story on May 7, only TV viewers in western Washington could watch it on Channel 4, unless you had Internet access.
A text version of the story appeared on KOMOTV.com with a link to streaming video clip of the story. Now anybody in the world with Internet access could view the story and allot of people did.
To date, just over 10 million people have viewed the IBC story, making it the most downloaded video in KOMO-TV history.
How did it get so popular? We've discovered it's a combination of a viral e-mail campaign and search engines.
In the weeks after the story aired, some people wrote an e-mail to their friends warning them about the cancer. Embedded in the email was a link to the video clip on the KOMO-TV Web site.
Those friends forwarded it on to a friend and they in turn did the same. The e-mail spread like wildfire across the globe.
It's even been posted as truth on popular Urban Legend sites such as Snopes.com, Urbanlegends.About.com, and www.truthorfiction.com
We've also seen hundreds of e-mails from people asking for more information, and we're told that IBC support groups have been getting a lot of people calling with questions.
The 'Search Engine' Effect'
Now, add in the search engine affect. For example, if you search "IBC breast" on the popular search engine Google, links to KOMO's video clips are second and third only to the Inflammatory Breast Cancer Research Foundation.
Google bases part of its ranking on the number of links from outside Web sites to a particular webpage. The number of links and the quality of those links generate a high ranking on Google.
If you combine the links pointed to KOMO that are embedded in the IBC Research Foundation website with the links from the urban legend websites and other web pages with the well circulated e-mail, it all adds up to a high Google ranking for KOMO's IBC video clip.
To date, there have been 10 million views of the IBC story. That's more than double the population of the entire state of Washington. A far cry from the number of viewers that first saw the story on broadcast TV.
Governor Signs Breast Cancer Proclamation
By: Michelle Esteban
Sept. 19, 2006
Washington became the first state in the country on Tuesday to recognize inflammatory breast cancer.
It's an uncommon, but aggressive and often lethal form of breast cancer.
Governor Chris Gregoire and IBC advocates made the first week of October inflammatory breast cancer awareness week.
"Thank you so much," said Gregoire moments before signing the proclamation. The governor made it official, but it was the people surrounding her who made it happen.
For years they've been trying to get our attention; trying to warn us about inflammatory breast cancer. "They" are IBC survivors and their families.
"This is my daughter Christine," Patti Bradfield told the Governor. Christine was diagnosed with IBC in her late 30s. It started in her breast and is now in her lungs and bones.
They all tell the same story: they never heard of IBC until they were diagnosed. They don't want that to happen to you and neither does the Governor.
"It can be you, it was me," said Gregoire. Three years ago this month, the Governor underwent breast cancer surgery. Doctors got the cancer.
Governor Gregoire knows that IBC is an uncommon form of breast cancer. The National Cancer Institute says up to 4 percent of all breast cancer is IBC. The Inflammatory Breast Cancer Research Foundation says it's higher: 6 percent in Caucasians and 10 percent among African Americans.
"I had an uncommon form of breast cancer, when you don't have it it you look at the other person and say it's never going to happen to me," says the Governor.
When Phil Willingham's wife Marilyn died from IBC last December he vowed to make sure every woman knows there is more than one kind of breast cancer -- and you don't have to have a lump to have breast cancer.
IBC often forms in sheets. Symptoms include a swollen breast that can be hot to the touch, stabbing pain, a red blotchy and itchy breast .
Washington's proclamation was Phil's idea. "I told Marilyn's story," says Willingham.
During the January legislative session, less than a month after losing his wife, Phil met with every lawmaker or their staff, begging them to help create awareness.
On Tuesday, Phil made the Legislative rounds again, back where it all began to say thank you.
"It was because of your diligence, I'm really proud of you," a legislative aide tells Willingham.
The governor's office says last year 210,000 breast cancer cases were diagnosed; six percent were IBC.
Because there's often no lump, IBC cases are usually not detected on a mammogram or ultrasound. Doctors say the best bet is a biopsy, but in some cases an MRI will find it.
Easiest thing to remember: any changes to your breast, get it checked out.
IBC: The Silent Killer Wins Two Regional Emmy Awards
On June 2, KOMO-TV was awarded an Emmy for Community Service and Continuing Coverage for our series on inflammatory breast cancer.
"The Emmy is just the icing on the cake," Michelle Esteban said at the awards ceremony. "I will always look back long after my career and know that telling the stories of so many brave woman and warning millions of others was one of the most important and most rewarding things I've done in my career. Thank you! So far, 20 million people have downloaded our reports - if you're one of them, pass it on."
A special thanks to Patti Bradfield who first pitched the story idea. She begged/demanded we warn women and doctors about IBC. Patti's daughter Tina was diagnosed with IBC in her 30's.Thanks for keeping me focused and committed. To all the Patti Bradfield's of the world who carry a torch for IBC Awareness with aplomb - keep on keeping on.
I really want to dedicate the awards to the memory of Deena McIlroy, who passed away two weeks ago from IBC. Deena let us shadow her in chemotherapy and sit with her as her doctor told her that they were running out of chemotherapies to try, and I learned that day that cancer is so damn smart. Even in her toughest moments, Deena took time to warn other women. Because of her selflessness, others will know that there is more than one kind of breast cancer, they'll know the symptoms of the most lethal form of breast cancer and many women will survive IBC because they now know.
'Don't take 'no' for an answer. It's your body'
Feb. 6, 2008. By: Michelle Esteban
A Rochester woman says a KOMO 4 Problem Solvers report may have saved her life. Lori Davider says her first doctor missed her deadly form of breast cancer.
It all began innocently. Lori Davider was just catching up on phone calls.
"From that moment on my life definitely changed," she said.
She and her sister-in-law Luanna rarely chat on the phone, but Lori needed to talk. When her mom didn't pick up, she says fate made her call Luanna.
"I almost didn't say nothing," said Luanna Bundren.
Lori explained something was wrong with her breast. One breast swelled up overnight and looked red, swollen with a caved-in nipple. And her skin had the texture of an orange.
Lori was stumped and Luanna was stunned.
"Something said 'tell her.' So I said, 'Have you ever heard of Inflammatory Breast Cancer?' And she said 'no,'" said Luanna.
"She said: 'I'm sure you don't have it,' but she said look at KOMO's Web site," said Lori.
Luanna had just watched a follow-up report on the award-winning Problem Solver series, The Silent Killer: Inflammatory Breast Cancer.
"I said: 'KOMO did a story on it and I know they got the story on the Web site. Go look at it,' " Luanna told her.
Lori did just that.
"I went home that night and looked at the KOMO Web site and it was like bing, bing, bing! I looked at the pictures and said 'this is me,' " she said.
Lori showed her husband Rick.
"It's a roller coaster, an emotional roller coaster," he said, fighting back tears.
"No one knows what it is," said Lori.
Neither had ever heard of IBC. And Lori has spent her adult life working in the medical field.
IBC is the most lethal form of breast cancer. The National Cancer Institute says up to 5 percent of all breast cancer is IBC and early diagnosis is essential. In African-Americans, it can be as high as 10 percent.
The Daviders were like so many IBC patients and families; they didn't hear of it until they were fighting it. It's the most lethal and aggressive form of breast cancer.
"The rest of Lori's life is going to be a battle with this cancer. It's a nasty, ugly and mean disease," said Rick.
Lori's mammogram showed no sign of breast cancer. Lori learned from our report that's not unusual. IBC typically forms in sheets, not in lumps. It rarely appears on mammograms.
Lori and Rick said they instantly knew they were in the fight of their lives.
"We found our soul mates, we're so much in love," said Rick.
And they were so determined to fight. Lori got in with her gynecologist the next day.
"I walked in, saying 'this is IBC.' He did the exam and said 'I'd like to wait a good 2 weeks,'" Lori said.
It's in her medical records too -- her doctor wanted to wait. I've profiled six local women who were told to wait. Three of them are now dead. I wanted to talk to Lori's Olympia gynecologist about it. I called him, I sent him a certified letter, but have gotten no response. His office manager told me he doesn't comment on patients.
Lori knew with IBC, time is critical. IBC can spread in just a few weeks. Lori immediately got a second opinion and confirmed she was right -- she had IBC.
"The first doctor, had I listened, who knows where I'd be?" Lori said.
"We have to take everything about the breast serious," says Dr. Haleigh Werner with Radiant Care Radiation Oncology in Olympia and Aberdeen.
Werner is Lori's radiation oncologist. She says too many primary care physicians, nurse practitioners and even gynecologists have never knowingly seen a case of IBC. She thinks they get fooled by the patient's age. Lori's in her 40's, and we've profiled IBC patients in their 30s. One California teen was just 16 when she died.
"The group it affects - people aren't thinking cancer," said Werner.
But they should. And until they do, Lori insists now more than ever patients themselves make the best medical advocates. IBC is not exclusive to women; in rare cases men have been diagnosed, too.
"Don't take 'no' for an answer. It's your body," said Lori.
Her cancer began in her breast, but it's now spread to her brain. She's hoping blasts of radiation every day for 7 weeks and regiments of chemotherapy will stop the cancer from spreading. So far it's working; her brain tumors haven't grown. She's already undergone a double mastectomy. What began as stage-3 breast cancer is now stage 4.
"I saw your article and it saved my life and it still may save my life," Lori said.
All doctors are required to take refresher courses - it's part of their continuing medical education (CME). Lori wants IBC to be part of their CME. She might get her way, the Inflammatory Breast Cancer Clinic and Research Program at the University of Texas MD Anderson Cancer Center has scheduled a symposium later this year and plans to invite doctors from all over the world to support IBC-CME. They've asked me to speak at the Houston event - we'll let you know what happens.