Spreading the word on IBC

[MsSparkie]

KOMO 4 News Special Report: Inflammatory Breast Cancer

May 7, 2006

By Michelle Esteban


Video : KOMO 4 NEWS

The Silent Killer: Inflammatory Breast Cancer (Original story seen on the Web)

July 6th IBC Update:
A Story Of Hope

Aug. 1 Update: The Word Is Getting Out

How The Story Spread So Quickly


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.

[MsSparkie]

--------------------------------------------------------------------------------


IBC Update For July 6: 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: 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.

[Sundae]

Thanks for that - I hadn't heard anything about this so will start circulating links to my friends.

[LabRat]

Ditto.