Marlena Murphy: Bringing Cancer Education to the Community as a Patient Advocate
In 2018, during her regular, monthly self-exam, Marlena Murphy felt a lump in her left breast. It was a wake-up call for the then 40-year-old mother from Union City, Georgia, near Atlanta. She then was scheduled for a mammogram, which was quickly followed by an ultrasound and biopsy and ultimately a breast MRI.
She was diagnosed with stage III triple-negative breast cancer—an aggressive subtype of breast cancer with twice the incidence rate in Black women compared to White women. Marlena’s cancer had spread into the surrounding lymph nodes.
“They said it was an aggressive form of cancer and things needed to be done pretty quickly,” she said. “It was shocking. I didn’t even know there were multiple types of breast cancer.”
Marlena began chemotherapy to shrink the tumor before undergoing lumpectomy to remove the tumor and lymphadenectomy to remove cancer-containing lymph nodes to prevent metastasis. To keep cancer from recurring, she underwent radiation therapy and began taking a different chemotherapeutic called capecitabine (Xeloda).
During treatment, Marlena was unable to work because of the side effects of her medications, the rigorous treatment schedule, and the development of neuropathy, a condition that causes weakness and pain in the hands and feet; this also made it hard for her to travel to and from medical appointments.
In addition to the physical impact, Marlena experienced a psychological toll.
“It was just mentally and emotionally draining, and you don’t even realize it’s going to take that toll. And it affected not just me; I have a daughter, so it definitely had an effect on her as well,” she said.
The treatments have also led to lasting side effects for Marlena, including lymphedema—the fluid build-up in soft body tissue from a blocked or damaged lymph system in the arms, as well as “chemo brain”—a term used to describe mental cloudiness and memory difficulties that may occur because of chemotherapy. Despite these challenges, Marlena is currently enrolled in graduate school. She says, “It’s funny because I didn’t even think I would be able to succeed in grad school because of the chemo brain, but I was determined. I’ve been doing really great.”
During her treatment, Marlena began to volunteer as an advocate, supporting other cancer patients in managing their illnesses. Following the conclusion of her treatment, Marlena became a patient advocate with two organizations to help educate her community about cancer incidence, research, and screening.
“Black people love education. That’s our way to move past so many different barriers. It’s also important that information comes from a trusted source,” Marlena said. “If a person is coming into our community that looks like us, which is key, telling us about the statistics regarding triple-negative breast cancer, we’ll listen.”
Marlena’s experiences as a patient and an advocate have shown her where gaps exist in community support, and sparked ideas about how policy makers can help.
“Funding toward education, funding to get out there in the community, educational workshops, providing money for transportation, and also protections for missed work. If a woman needs to go and get a mammogram, she should not be punished for missing work, because a lot of people might fear their job is on the line,” Marlena said. Marlena’s experience has also led her to talk to Black friends and community members about the importance of participating in clinical trials. Only about 7.3 percent of participants in U.S. phase I cancer clinical trials are Black, compared with 84.2 percent who are White. This long-standing disparity stems from a history of exploitation of minorities by the medical community.
“Often Black people think they’re going to put something that’s not supposed to be in us or take our blood or samples and make all of this money and not pay us,” Marlena said of the medical establishment. “Talking with people about clinical trials and showing them that there is a benefit, you’ll find more people wanting to get educated and participate in clinical trials. But it’s going to take a person who looks like us to say, ‘This is why you should do a clinical trial’.”
Currently, Marlena receives follow-up care that includes mammograms twice a year and routine visits with her oncologist. Recently, after feeling a small bump under her right arm—the opposite side of her original cancer—she utilized telehealth to contact her doctor. Ultimately, tests detected cancer cells.
“Hopefully I caught it fast enough and will not have to go through the extensive treatment that I had to do before,” she said.
Marlena has a powerful message for others: “When people hear cancer, they automatically think death sentence. It’s not, and I’m a firm believer in that.
“Keep fighting. I would say to patients and survivors to keep pushing forward; don’t just hear cancer diagnosis and think, oh, my life is over. No, it is not over. Your life may be just beginning; this may be just like me. It might be the thing that needs to push you forward to move toward your purpose.”