Katrece Nolen: Advocating for Better Care in Underserved Communities

Katrece was diagnosed with stage III inflammatory breast cancer in February 2013. Her journey began one day when she was playing with her son. “I just happened to look down and thought, you know what, one of my breasts seems to be slightly larger than the other,” she said. The next morning, she called her doctor’s office. Even though her regular physician was unavailable, she made an appointment for the same day.

The doctor did a breast exam but did not feel any lumps. He did, however, notice some swelling and that the breast was warm to the touch. While unusual, since Katrece wasn’t breastfeeding, the doctor thought it could be mastitis—an infectious condition that occurs in women who are breastfeeding due to clogged milk ducts—and prescribed her antibiotics. He also suggested that she receive a mammogram.

Katrece got the mammogram right away. According to the radiologist, there was nothing suspicious. Within a couple of weeks, however, her left breast had swollen so much that she couldn’t button her shirt. “That’s when fear set in,” she recalled. When she tried to make an appointment with a breast surgeon, she was told it wouldn’t be for several months. But she advocated for herself and secured an appointment that week.

“I brought the mammogram CD they’d asked me to bring,” she said. But the receptionist called me up to the front and asked for the film. Katrece explained she had given them the CD, but was told, “the doctors require that you have the mammogram film. If you don’t have the film, we’re going to have to reschedule your appointment.”

Katrece insisted on seeing a doctor even if it meant she wouldn’t be covered by her insurance. She spoke with the office manager. “While we’re going back and forth, in walks a doctor. She has a folder underneath her arm, quickly introduces herself and says,‘You know what? I went ahead and looked at your information. And now that I see you in person, I suspect that you might have inflammatory breast cancer.’”

The surgeon ordered a skin biopsy to test for cancer because inflammatory breast cancer can be present in the skin. The biopsy was done on a Friday and the following Monday Katrece received a call confirming that she had cancer. She quickly began chemotherapy followed by a mastectomy and radiation. “Scheduling all those things seemed like the longest drawn-out process that you can imagine,” she said. One of the main challenges during treatment was getting the information she needed to make informed decisions. “The other challenge was being a mom of young kids,” Katrece said. She was terrified of introducing into their lives the fear of losing their mother.

Clinical trials are vital to progress against cancer. Katrece, however, was never given an opportunity to participate in a trial. “Because I had an aggressive cancer, I knew that clinical trials might be best suited for me. I remember talking to
my local oncologist and her response was, ‘No, we do not have any clinical trials available for you at our practice,’” she recalled. Katrece did not realize until later that it was her responsibility to personally search for clinical trials outside the scope of the local oncology practice. “When you’re in the doctor’s office, that’s probably going to be the highest chance that someone’s going to participate in a clinical trial. And I think in many instances, we as patients don’t feel like we’re recruited enough to participate.” She thinks community oncologists should consider clinical trials that are external to the practice and actively aid in the search.

“I crossed the 10-year mark, which for the type of cancer I have is rare. I feel like I’ve won the lottery,” she said. She takes medication to reduce the likelihood of a recurrence. Navigating through her cancer journey made Katrece a passionate advocate for other patients. By sharing her experiences, Katrece has connected with a community of women who were fighting inflammatory breast cancer and with specialists in its treatment.

To empower other women and families dealing with cancer, especially Black women, with the knowledge and resources that she gathered during her journey, Katrece wrote a book. “I think it helps me advance advocacy by letting people know that our stories exist. Hopefully, my book can help shed light on the fact that there should be more of us who survive this disease,” she said. Katrece wants every patient to advocate for themselves. “You are worthy, and you need to make sure that the medical professionals understand that you are a priority. You must speak up.”