Five years ago, at age 42, Sheryl Flowers, journalist and former executive producer for The Tavis Smiley Show on public radio, lost a 2-year battle with Triple Negative Breast Cancer, or TNBC.
In her memory, her sister, Lori Flowers, co-founded Triple Step Towards the Cure, an organization specifically focused on TNBC, especially today on Triple Negative Breast Cancer Awareness Day.
TNBC is a type of breast cancer that is considered “triple negative” because it lacks receptors for estrogen, progesterone and HER2. This makes it difficult to treat because many of the current treatments focus on one or more of those three receptors. It can also be very aggressive and is more like to come back than other types of breast cancer.
Sheryl underwent chemoradiation and surgery, but it wasn’t until she and her family advocated for her that doctors discovered she had the triple-negative type of breast cancer.
Lori had never heard of TNBC before her sister’s diagnosis. In fact, Lori admits that she didn’t realize there were different types of breast cancer. But, they got the idea from an Oprah Winfrey article.
“Our family told the oncologist, ‘you need to pursue this because we think this is the type of tumor [Sheryl] has,’” Lori explains. “She had an oncologist who we felt wasn’t well versed in what was going on.”
And they were right.
TNBC can respond to chemotherapy, but some tougher kinds have found luck with experimental research trials. However, those usually works better early in the disease.
“[Sheryl] was not eligible because by the time the oncologist figured out that the chemo hadn’t worked as they thought, she was too advanced,” Lori recalls.
Lori and her mother started the organization, along with another TNBC survivor, Louisa Gloger, to make sure that women who were fighting this didn’t feel isolated and had people to talk to who understood what was going on, and could get financial help she says.
“There are so many organizations giving to research, but the patient still has to live day to day,” Lori says. “TNBC is not a death sentence, but it’s still a very challenging type of cancer. While they’re waiting for these wonderful research options, we want to give a little bit of hope.”
The organization also provides financial assistance based on an application process, which has helped women with doctor copays, transportation to appointments, buying groceries and even for people to get second opinions.
One of the important things that Lori wants women to know is that TNBC affects younger women, women of color, but women of all walks of life as well.
“Get to the doctor on a regular basis,” she says. “There are lots of women who have no family history [of TNBC] like my sister.”
She adds that you have to be your own best advocate.
“If they don’t want to listen to you, go to someone else,” she says. “We’ve had young women with TNBC whose doctors turned them away, told them they’re too young. These women listened to their gut and insisted on getting in and getting screened.”
Today for TNBC Awareness Day, created by the Triple Negative Breast Cancer Foundation, Triple Steps Towards the Cure is participating along with other groups and individuals in at least 30 states, ranging from women giving up their lattes to 5K runs to organized yoga sessions.
Triple Step is also doing an online campaign surrounding their TNBC awareness pins shaped like stilettos.
“If you have a pin, wear it. If you don’t, we invite you to get one. Then take a selfie [photo] of yourself wearing one and post it as your Facebook profile picture or tweet it out. Let people [with TNBC] know that there are so many people out there that support them,” Lori says.
The pins were designed as stilettos in memory of Sheryl who they called the Panamanian Imelda Marcos because of her love of shoes. They were first given out at Sheryl’s memorial service, and is now the logo of Triple Step Towards the Cure.
“It’s a symbol of femininity,” Lori says. “People think of breast cancer as something that strips that femininity away. But it’s not the hair, the breasts, that’s not what makes you a woman. There’s nothing this disease can do to take that away from you. We wanted to celebrate that.”
Dr. Tyeese Gaines is a physician-journalist with over 10 years of print and broadcast experience, now serving as health editor for MSNBC’s theGrio.com. Dr. Ty is a practicing emergency medicine physician in New Jersey and clinical instructor of emergency medicine at Yale School of Medicine. Follow her on twitter at @doctorty.