It’s not unusual for cancer survivors to channel their hard-won insights into advocacy work.
Still, Yvonne McLean Florence, 57, stands out as a soft-spoken dynamo who closes gaps between the worlds of researchers, patients, nonprofits, and policy-makers.
The Yeadon resident is involved with big cancer organizations, including the American Cancer Society and the U.S. Department of Defense Breast Cancer Research Program, as well as smaller initiatives. One of them is Sisters R Us Circle of Survivors, the nonprofit she founded in 2016, in part to give breast cancer patients the gift of a respite.
“We give them a gift card. They may want to go to a movie or a restaurant," she said. "One young lady asked for someone to come to her home and decorate it for Christmas. She had two small children. She loved it.”
“Yvonne is definitely someone who wants to take this traumatic experience that she’s had and turn it into a way to help others,” said Janine Guglielmino, senior director of programs at Bala Cynwyd-based Living Beyond Breast Cancer, where Florence is a loyal volunteer. “It’s been important for her to show other African Americans that it’s possible to go through this horrible experience and come out the other side.”
Florence, whose treatment for advanced breast cancer upended her decades as an administrative assistant at the University of Pennsylvania, put it this way: “There was a silver lining because it brought me to what I’m doing now, which is far more rewarding and important to me.”
Before cancer, Florence was no stranger to health problems. She has coped for more than 30 years with lupus, a chronic, autoimmune disease that attacks healthy tissue.
But her Stage III breast cancer diagnosis in 2012 was a shock. She felt a lump under her arm just three months after a suspicious mammogram was deemed to be a false alarm. (Overall, screening mammograms miss about 20% of breast cancers.)
It turned out that she had an aggressive malignancy that had spread to her lymph nodes. After five months of chemotherapy, she had surgery, then radiation, then a year on Herceptin, a drug that blocks a chemical signal known to drive her type of cancer.
She also opted to take part in clinical testing of an experimental drug that targeted that chemical signal in a novel way.
“Because I had worked for a physician scientist, I knew about [clinical trials]. It wasn’t a hard sell for me,” she recalled. “But it was a very hard sell for my husband. He did not want me to participate,” partly because of the nation’s history of unethical medical testing on minorities.
The drug, Nerlynx, was approved in 2017 by the U.S. Food and Drug Administration. It is prescribed along with strong anti-diarrheal medication.
“If I swallowed my own spit, I had to go to the bathroom, so it was a struggle,” Florence recalled. “But I’m glad I’m an example that clinical trials are important and [African Americans] should use it as an option.”
Although she recently celebrated seven years cancer-free, she is not complacent. It was a friend’s recurrence after seven years that led Florence to get involved in state and national lobbying efforts to improve access to breast cancer screening and treatment.
In 2018, she went in a new direction. She completed the National Breast Cancer Coalition’s Project LEAD, a six-day intensive course designed to teach breast cancer advocates the basics of cancer biology, genetics, and research design. Her certification equipped her to help review breast cancer clinical trial proposals being considered for funding by the Department of Defense. She has also been a trial reviewer for the National Cancer Institute.
“It’s not that we [advocates] talk about it as an expert,” Florence said. “We ask questions from the patients’ perspective: ‘What about toxicity? This sounds good, but you need to think about X, Y and Z.’"
“The process can be intimidating,” she added. “But we can give the scientists advice that is only going to enhance the research and help get it funded.”
In December, she participated in a new patient-led initiative that is also aimed at bridging the communication divide between experts and patients. Called GRASP (Guiding Researchers and Advocates to Scientific Partnerships), it brought together small groups of experts and advocates to discuss selected scientific posters at the annual San Antonio Breast Cancer Symposium.
Florence, who earned a master of divinity degree from Palmer Theological Seminary in 2010, sees her advocacy work as a calling.
“For me, this was a major part of trying to reinvent myself,” Florence said. “I wanted my 14-year-old granddaughter to see that in life, we are going to have challenges. She’s seen Grandmom with no hair, Grandmom lying down, and now, Grandmom helping people.”
- Though overall rates of breast cancer in black women were lower in the past than in white women, today cancer incidence is about the same for women of both races.
- Breast cancer death rates are 40% higher among black women than white women, though death rates have declined for both groups in recent years.
- Breast cancer incidence rates were higher among black women than white women younger than 60 years old, but the situation is reversed for older women.
- Breast cancer was more likely to be found at an earlier stage among white women than among black women.
- For reasons that are being studied, black women are more likely to get triple-negative breast cancer, which is aggressive and tends to recur.