According to the American Cancer Society, breast cancer rates among African American women are on the rise. This is a shift from previous data that showed that African American women got breast cancer less than white women, but due to many factors including later diagnosis, and more aggressive types they tended to have a higher mortality rate.
The good news is that there are more black women who are surviving and thriving after the disease. Here are a few tips from several survivors.
1. Don’t blame yourself
The notion of breast cancer prevention is complicated. A woman’s overall risks can include family history, environmental factors, stress and diet. In fact, while race doesn’t necessarily contribute to a black woman’s chances of having cancer, research shows that it can contribute to the types and aggressiveness of the disease. Be vigilant about screening, so that you and your provider can take action in the earliest stages.
2. Don’t let your hair get in the way of your life
Many black women struggle with the idea of losing their hair during treatment. Janet Bennett, 67, was diagnosed in 2011. Bennett says her hair has never defined her, “so when I had to undergo chemotherapy and lose my hair and radiation, I didn’t care.” Bennett adds that she has opted to continue to shave her head, long after treatment.
3. Get a plan
“When I heard the diagnosis, my mind went to scary images of images of women who had cancer, says Celeste Julian, a teacher who lives in Katy, Texas, outside of Houston. Julian, 61, was diagnosed in 2012. “I’ve always had fibrous breasts, starting in the eighth grade,” she says. Julian had gone through several surgeries, to see if any of the growths were cancerous and they were always negative. “ I had a mammogram this time and they found cancerous.”
While the diagnosis is scary, Julian says take time to do your homework and absorb the information. “It is important to take a little time to pause and process. “A lump, even if it is the size of a pea isn’t going to turn into one the size of a sweet potato in a day, ”Julian says.
Cheryl Ward-Benjamin, 55, was 53 years old when she was diagnosed with inflammatory breast cancer, stage 3. She says, “There is a recommended treatment plan for Inflammatory Breast Cancer which is referred to as neoadjuvant treatment, which begins with chemotherapy to arrest the growth, then surgery, followed by radiation.”
Benjamin went through 16 rounds of chemo - the first four treatments were biweekly, followed by 12 treatments weekly. “I had a double mastectomy, with the second breast being elective and the other breast was a radical mastectomy. The final step was 40 rounds of chemotherapy Monday - Friday until completed,” Ward Benjamin says. “I was determined that I was going to be an active participant, ask questions, and do some reading regarding what to expect.”
4. Attitude makes all the difference
“Attitude is everything,” says Candice Bell, 60, who was diagnosed in 2005. ”If you believe you will beat this thing, you will.”
Risë Ratney agrees. Ratney underwent a lumpectomy and 30 rounds of radiation, And because she, like many black women had estrogen receptive breast cancer, she also had a hysterectomy. “Take a minute to absorb the shock, be scared and feel sorry for yourself,” she says.
She believes in the mind body connection in getting through tough health challenges. “Once your treatment plan is established, you have to believe you can get through it,” she says.
But it isn’t always easy. Julian says she was really challenged to stay positive after she had her first surgery to excise her tumor. “I ended up having a second surgery within 30 days of the first, because they didn’t get it all out the first time. I went through depression, but that made it worse.”
Julian says that she learned to just stop and breathe to refocus in order to get her attitude back on track.
Bennett says she focused on getting well versus the treatment. “Don’t get so wrapped up in it. Put on your big girl panties and do what you need to do,” she adds.
She had a lumpectomy and an additional surgery to clean up the margins of her cancer before she underwent four months of chemotherapy and radiation. She was fortunate to be able to work a reduced schedule while she was undergoing treatment. She also says she did everything to keep it light. “Being around other people, enjoying my pets, and watching television and reading things that made me laugh helped.”
5. Be informed
Be your own advocate and do your homework. “When I got my diagnosis I was so terrified that I could not research any options,” says Ratney. “I wasn’t given any other option so I just followed the plan outlined by my oncologist and surgeon.”
This is the case for many women, who hear the word “cancer” and have to make life or death decisions on how to treat it. And Ratney says if she had been given all the options she would have explored removing only the lead lymph nodes, versus removing several, that she says later caused chronic issues such as swelling and extreme stiffness.
6. Understand your health coverage
Many women assume that they have “good” insurance through their jobs, without understanding what will actually be covered and what won’t. Medical expenses that are not covered are a reason that people are forced to file bankruptcy.
Bell had insurance through her job that covered most of her treatment and care, but had out of pocket medical expenses such as prescriptions — including one that was $1,500 and wasn’t covered. Bell was able to go to her doctor for a less expensive option and got it.
But Julian says that even though she had insurance, having the second surgery so soon created a pile of mounting medical expenses that she's still paying for.
7. Let people help you
“Lean on the shoulders that are offered to you,” says Ratney.
She adds that it's important to find someone in your circle of friends and family to act as your healthcare advocate, willing to help you speak with the providers and think through any issues.
"Team Benjamin" was formed very quickly after Ward-Benjamin’s diagnosis and friends and family helped her piece together her options, providing resources and support.
She agrees with Ratney about enlisting a health advocate. “I had particular family and friends who were always present for my sessions or key appointments to be my additional eyes and ears, or make sure I remained comfortable — physically and mentally.”
8. Keep your eyes on the prize
Bell, who lost her own mother to breast cancer several years before her own diagnosis, knows how precious life is. She retired from her job after over 30 years, and spends time traveling with family, including her two young granddaughters. And she is now getting trained to be a community health worker to help give back.
Julian says that she too is focused family including her husband, and three children. “One is my fifteen year old daughter that I want to see graduate from high school.”
After she finished treatment Bennett went back to working full time. But there were mergers at her job when she got back. “I didn’t need that kind of stress, so I left.” She loves her life now because she says she is “able to do many of the things I hadn’t been able to do before.”
Ward-Benjamin says that her perspective on what is truly important has changed her life and she now manages her stress and is more patient with people.
“When I wake up in the morning it is a new day, with new opportunities and blessings,” she says. “Each one of us has our own journey, symptoms, range of side effects - but we share a common strength which we are fighting to win.”