Survivors speak out about racial disparities in breast cancer

CHARLOTTE, NC (WBTV) - One in eight women are diagnosed with breast cancer, but new research shows the disparities in how different people are affected.

Dr. Nadine Barrett from Duke University cites studies that have found white women are more likely to be diagnosed with breast cancer while non-white women -- mainly black or Hispanic women -- are more likely to die from it.

"It's disappointing," Dr. Barrett said. "Quite frankly, it's unacceptable."

In 2013, Dr. Barrett says the breast cancer mortality was 39% higher in black women than in white women. And African-American women are often diagnosed with late-stage breast cancer when treatment options are limited, costly and the prognosis is poor.

Dr. Barrett said as much as research backs up the headline fact, she doesn't have the specific answer as to why. She says it could be a lack of resources, information, fear to discuss, genetics or education.

She says the solution, always, is knowledge.

"Get the word out there that it's okay to speak about it, but it's also okay to have faith that it'll  be addressed," she said. "Knowing is better than
not knowing. Knowing means that you can do something about it."

In an effort to do just that, WBTV anchor Molly Gr antham put together a panel of five breast cancer survivors who fall in the category of "most likely to die".

All five met at WBTV studios for the first time to talk candidly about their own breast cancer journeys, and their reaction to hearing the research Barrett cited. In the group, all five women had gone through chemotherapy, four went through radiation, two had a mastectomy and three had a lumpectomy.

"I had no history in my family of breast cancer, so I was really shocked," said 38-year-old Gloria Johnson.

Gloria is an 8-year survivor.

"It's not discussed in the Hispanic community," she said. "It's people being scared. Like, 'Who's going to take care of my family?' Or, 'Who's
going to take care of my kids?' I'm trying to help change that. I try to talk about my battle, and teach my kids strength. That's why I share my story."

"Hearing the mortality rate in African American women is higher makes me angry," said 62-year-old Ellen Lemmon. "Because I'm like, 'God. Black women are prone to die."

Ellen says she works to spread the word about self-exams and yearly mammograms through a program called "Pink Sunday". That's where Komen Charlotte works with volunteers to have meetings with various women in churches.

"It's often African-American churches," Ellen said. "I think it makes a big difference. We print information in our church bulletins and have meetings. I've been involved for years and think we've probably touched 50,000 women by now in the Charlotte-area. There is a lot of information out there, so there's no excuse."

52-year-old Deirdre Mack Lynch agreed.  This marks her 20th year of survivorship.

"It was a Saturday morning when I felt my own lump," she said. "I called my mom. She said to go to a doctor. I did on Monday. They sent me to a specialist. Turns out it was Stage II."

Deirdre says when she was diagnosed there weren't many resources.

"When I had it I wasn't educated," she said. "There wasn't much out there to help me. But I took charge because I was like, 'I have a daughter. I have a family. I have to get this thing taken care of.' And that's what I did."

Julie Logan is a 12 year survivor. She says she thinks one explanation for the research might be that women are better at being caregivers than thinking about themselves.

"We try to be so strong," she said. "We're all trying to be strong women. We take care of everyone else and not always ourselves."

Julie says being a cancer survivor can have lasting effects on your mentality.

"Even to this day when I go get a mammogram I have that anxiety inside because you're waiting for the doctor to come out and you're thinking, 'Oh God. Am I??'"

The fifth woman on the panel, 40-year-old Vinita Shaw-Simmons, is a five-year survivor.

"I think there is still that taboo and stigma within the black community," she said. "I think that's why more black women die from the disease. We're taught not to air our dirty laundry. You don't tell your business. Especially with the traditional old-school parenting style, you just don't…. I mean, you find out your cousin passed away and you find out they had THIS for so many years and you never knew."

Vinita says to combat the secrecy, she shares her testimony often, and uses social media to spread the word and help others network.

Komen Charlotte says it's working to help educate and change this gap. It believes all women should have equal access to quality breast health care.

WEB EXTRA: Susan G. Komen information on breast cancer disparities

Charlotte Radiology provides free educational materials to countless organizations and women throughout the year.

Project Pink, a Charlotte Radiology/Levine Cancer Institute partnership, allows women with no insurance to be screened and pays for follow up imaging, if needed. Project Pink Plus formed just in the past year for women with no insurance who have a lump or issue to be seen for a diagnostic breast imaging.

For more information on these projects, email the Levine Cancer Institute.

This year Komen Charlotte awarded nearly $1 million to 17 local organizations to provide free breast health services to anyone in our communities who is uninsured or underinsured. These services include screenings, diagnostics, education/outreach, transportation, lymphedema therapy, lymphedema garments/bandages and survivorship support. For more information about the programs please visit: http://komencharlotte.org/impact/community-grants/ If you need any of these free resources, please call Komen Charlotte at 704-347-8181. For breast health information from Novant Health, please click here. For information from Mecklenburg Radiology Associates, please click here.

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