Editor’s Note: Zoe Christopher, BCAction’s Information and Resource Liaison, is on the receiving end of most of the emails, letters and phone calls we get from BCAction members. She hears both the inspiring and the deeply disturbing stories from our members and does the research to find answers to your questions. One of the hard truths we all know about breast cancer is that sometimes there are no good answers to find. For this issue’s Member Perspective we asked Zoe to talk with a fierce, inspiring BCAction member named Joshlyn Earls who has been frustrated by the lack of information and resources available anywhere for African-American women living with inflammatory breast cancer.
Joshlyn Earls is a woman determined to beat the odds she’s been given by the medical establishment. Diagnosed with inflammatory breast cancer (IBC), she completed chemotherapy, bilateral mastectomy, and radiation, and is now experiencing the side effects of tamoxifen. “Why can’t I find significant data on African American women and IBC? We’re diagnosed more often and at younger ages than other women. About 10 percent of new breast cancer cases in African American women will be IBC — you’d think they’d be doing more specific research.”
Joshlyn belongs to an IBC support group with about 2,000 members. “When I asked how many were African American, the answer was zero!” she says. “What does that mean? Is our survival rate different? Is this a cultural issue? I can’t find answers to a lot of my questions. Much of the data I do find is misleading, or the statistics apply to breast cancer in general, not IBC.”
An energetic mother, grandmother and wife of 38 years, Joshlyn is used to getting answers. “I want to talk to women who are living with IBC and look like me. I want to talk to women who were diagnosed more than two years ago, but I’ve only been able to find four who are living with it,” says Joshlyn. “And I want to talk to African-American women who’ve discontinued tamoxifen. The side effects are terrible, and I know there are many women who choose quality of life over toxic medications.”
Joshlyn says, rightly, that we need improved detection and more education for women about inflammatory breast cancer. Though symptoms are often felt and seen externally — thickening of the breast skin, redness, swelling, heat — IBC is aggressive and is often diagnosed very late. It forms in layers, as opposed to a tumor, and is less likely to be detected on a mammogram or by breast self-exam if women are looking for a lump.
For years, Joshlyn owned and operated a full-service beauty product distribution company and produced one of the largest multicultural beauty trade shows in Northern California. During the course of this work, she was exposed to an array of toxic chemicals. When she became pregnant, she pulled back. “I knew it was a toxic environment. Maybe that’s where my cancer originated — there’s no way to know,” she says. “But I actually developed an organic alternative product — I was ahead of my time. It’s a hard field to change, and after 12 years I stopped promoting it.”
Joshlyn’s online research about breast cancer brought her to BCAction. Learning about our work in support of the Safe Cosmetics Act and the Safe Chemicals Act of 2012, she found a niche. “Now you’ll find me fiercely advocating for both. I’m encouraged to know this is getting attention,” Joshyln said.
A feisty activist by nature and not one to settle for the status quo, Joshlyn founded her own nonprofit to address the gaps she’s found to be so frustrating. “I want to educate the breast cancer community, particularly African American women, and provide solid, meaningful information about this very serious form of breast cancer,” she said. “I want that information to be accessible when people need it. I also want to find ways to provide financial assistance for people who are in treatment because I found that organizations that claim to offer assistance, don’t. They’re misleading.”
It’s well-known that fewer African American women are diagnosed with breast cancer than white women, but the mortality rate for African American women is higher than for white women. “The information seems to stop there for us. And in regard to IBC, I know we’re not all dead, though my research would lead me to think otherwise,” she insists. “I know we’re out here. How will we ever reduce mortality or effectively treat IBC, or improve our quality of life unless we unite and raise our voices and demand progress?”
For more information about IBC see: http://bcaction.org/resources/ask-zoe/#anchor2