Breast cancer can be an exhausting disease, from diagnosis through treatment. The physical and financial demands on a patient can be draining.
As if that were not scary enough, couple that scenario with limited sick days and a desperate need to hold onto your job. How do breast cancer patients survive issues outside of their illness?
That is the premise behind a pilot study being conducted by Jennifer Swanberg, executive director of the Institute for Workplace Innovation, and Robin Vanderpool, assistant professor in the University of Kentucky College of Public Health.
"We are trying to understand how women who have been diagnosed and who work lower-paying jobs, how they navigate," Swanberg said. "Breast cancer treatment and recovery is difficult even in the best of circumstances when one has access to personal and professional resources.
"We are interested in learning how employment circumstances may facilitate or inhibit the treatment process. For instance, how do women manage to stay employed and continue treatment and recover when they don't have access to workplace policies and practices such as paid sick or vacation leave?"
Vanderpool has studied cancer prevention and control for years at UK, and Swanberg studies workplace issues.
"We are focusing on women who work low-wage hourly jobs. They are more vulnerable. At lot of them, if they don't go to work, they don't make any money," Vanderpool said.
The researchers want to speak with 20 to 40 women, 18 to 65 years old, who were diagnosed with breast cancer for the first time in the past three years. Swanberg said she knows that men can have breast cancer too, but the pilot study had to be narrowly focused. The women must have hourly-wage jobs, working at least 30 hours a week and earning $15 an hour or less.
The women will be given a brief survey and then be interviewed by phone for about an hour. Participants will be compensated for their time.
"We won't ask who their employers were," Swanberg said. "We want to know what the workplace did to help them stay employed. We want to get a sense of what they are dealing with, how the symptoms are impacting their work, and how work is impacting their treatment."
One question is what employers did to help the women stay employed. Even after surgery, Vanderpool said, the breast cancer survivor might have physical limitations, including how much she can lift or whether she can drive a vehicle. And if she undergoes radiation and chemotherapy, a side effect could be a lack of energy or the inability to think clearly.
The researchers have spoken with seven women.
"What we are finding is that these women want to tell their stories," Vanderpool said. "Sometimes there are good things happening in the workplace. Co-workers take them food, or they donate sick leave if they can."
The research will be used in a grant proposal to be submitted to the National Cancer Institute. The researchers seek to design a larger study that would follow a woman for 18 months from the point of diagnosis.
"What we want to try to do is ensure women can get the treatment they need and not lose their jobs," Swanberg said. "We want them to know their rights and we want to educate employers."
"We know women want to tell their stories, and we are here to listen," Vanderpool said.