Last week, I shared two stories from Patient Brigade members at the University of Chicago Cancer Center. For the final story in this series, I am highlighting a different take on the unsung heroes in Cancer Care.
The familiar narrative for treatment of a cancer diagnosis is that the process can be physically, emotionally, and financially draining. While Carol admits that having cancer wasn’t the highest point in her life, I was taken aback when she told me, “Having cancer wasn’t the worst thing. It made me more humble. It made me appreciate all the things I took for granted.”
Carol is a two-time survivor of breast cancer, once in 2014, and then again in 2018. Like other women and especially black women, she was dismissed by her primary care provider after asking for a mammogram at her annual physical. Though she had a family history of breast cancer, she was only 47 years old, and the doctor believed that the procedure was unnecessary.
Just two weeks later, Carol felt a small lump in her armpit. A trip to urgent care and an ultrasound revealed a mass of tissue, proven to stage II breast cancer through a biopsy.
“When your body talks to you, you have to listen to it. I knew it was more than a little bump.”
Carol was working two part-time jobs, attending college, and was a single mother of four with two young boys still at home. She was in the safety net of Medicaid but was scared that her insurance coverage would put a target on her back for a lower quality of treatment. She had previous experiences of discrimination in suburban healthcare clinics. Whether it was her race, her gender, or her insurance status, Carol refused to be treated poorly by the medical industry.
At her first treatment visit in the Mile Square Clinic in Englewood, Carol maintained low expectations. A community on the southwest side of Chicago, Englewood is often represented as an area with limited opportunity. Mile Square is a Federally Qualified Health Center and receives support from the federal government to provide exceptional quality of care to low-income community members.
“When I was on public insurance, all I could think about was what quality of care I was going to receive. Whether or not they would treat me differently because I couldn’t afford it.”
As a result, Carol was met with such exceptional care the moment she walked through the doors. Met on the arm by a patient navigator, she still remembers her words, “We are going to do this together – I am going to be there for you every step of the way.”
Her care team was optimistic that due to her proactiveness and following the signs her body had given, the early detection would allow for a full recovery from treatment. Most important to Carol, her entire team, especially her surgeon, deeply respected the shared decision-making power between a patient and a doctor. While the doctors might have had the medical expertise, Carol was given the ability to decide the treatment plan that made the most sense to her life’s circumstances. She eventually decided to go with two lumpectomies to remove the cancerous tissue.
“They were able to care for me and teach me at the same time… They genuinely cared, and they treated me like I was their own family.”
Four years later, Carol found herself back at Mile Square with a lump in the opposite breast. The same patient navigator that had walk the walk with her the first time around came to her exam room after hearing the news. She hugged her and followed the embrace with “Carol, we beat it once, and we’re going to beat it again.”
Beat it, they did, and after rounds of radiation and chemotherapy, Carol is now another full year cancer-free. This time, Carol was enrolled in a private health insurance plan after graduating with her degree in Business Management and obtaining a full-time job. During both treatments with different insurance types, Carol never noticed a difference in the level of individualization and compassion of her care team.
“Most of the time I came to Mile Square, I left laughing. And I think that was imperative to my survival at the end.”
It’s not unusual for cancer survivors to suggest that their diagnosis changed their outlook on life. It’s an experience that drives people to appreciate the moments between the chaos of appointments and treatment. In Carol’s words, her success of today was directly due to the members of her care team taking time to listen, understand her as a person, and treat her, not just with medicine, but also with respect.
Carol was supported by her co-workers