Navigating My Care in a Pandemic
By Nadia Bey
My first instinct was to ignore it.
Of course, I couldn’t ignore the discomfort I felt whenever I slept on my side, the firmness that met my fingers each time I prodded it, or the way it protruded in the mirror. But at least for a while, I wanted to pretend that I hadn’t found a lump in my breast, and so I did.
It was mid-February, a month into my second semester at Duke, and I finally felt like I was in control. I’d found a way to power through the chaos, to the extent that addressing my own health felt like an unwanted interruption. For days, I floated between classes, meetings and social events as if everything were normal. Eventually I mustered the courage to go to Student Health, after which I was referred to the hospital for an ultrasound.
I scheduled an appointment at Duke Cancer Center for March 16, the Monday after spring break.
“Are you sure you don’t want to see someone over the break?” my mom asked when I told her over the phone.
“No,” I answered after a brief pause. “They referred me up here so I might as well do everything up here.”
In my head, everything was foolproof. I’d go home for break and then come back ready for the appointment. I scheduled it for 9 a.m. so I’d have enough time to get to class at 11:45. COVID-19 was just a vaguely threatening blip on my radar then, blinking somewhere over the sea where it couldn’t reach me. The idea of not being able to return to campus after break didn’t even cross my mind.
And then the announcement came on March 10, and I could feel my stomach twisting into knots as I realized not only that my freshman year was effectively over, but that I would have to find another place to stay for my appointment. On March 15, I laid awake in a hotel room unsure of what would come next, for my entire world had been thrown off-balance in just a few weeks.
I received two wristbands at the Cancer Center the next morning — the white paper band with my identifying information, and the yellow plastic band signaling I had passed the screening at the front desk.
Medical appointments can be best characterized as an endless stream of questioning. The more appointments you attend, the more familiar you are with what gets asked and what the answers may be, yet knowing all the answers doesn’t make you any less afraid. The questions I answered in breast imaging were similar to the ones I answered in Student Health and the ones I would eventually answer to a surgeon.
When was the first time you felt it? Roughly a month had passed by the time I ended up at the Cancer Center, watching a black and white image move on a screen.
How would you rate your pain on a scale from 1 to 10? Occasionally, an ache would creep through my nerves as if someone had set an electrode on them and slowly turned up the voltage. It was fleeting, disappearing almost as quickly as it had come. I answered “one”.
Likewise, the screening questions at the front desk would become a staple of seeking care during the pandemic, and later on, life on campus. Do you have any flu-like symptoms? Have you been to any of these places in the last 14 days? If my responses landed me somewhere on a scale from 1 to 10, I would be closer to one — but, as we know now, absence of evidence is not evidence of absence.
I remember lying on the examination table wondering how I’d ended up there. There was, of course, the irony in being a Duke student receiving care at Duke Hospital, the same hospital I’d visited for class and written Chronicle articles about, but there was also the legitimate question of what happened to me? The only recent development I could think of was that I had started taking oral contraceptives in October — but when I raised the question, I was informed that the pill likely hadn’t caused the mass, and that masses were often caused by hormonal changes.
There were other reasons this could have happened; I was not the first person in my family to have a breast lump, nor would I be the first to have cancer if that had been the diagnosis. There’s also existing research on racial disparities in breast disease. Yet, to this day, my questions still feel unanswered.
Malignant tumors are typically immobile with less defined boundaries, but my mass was mobile with round, defined edges. I likely had a fibroadenoma — a benign fibroid tumor that comprises nearly all breast tumors under age 25 — but because of how suddenly it seemed to appear, they wanted to make sure it wasn’t a phyllodes tumor, which expands rapidly and has a chance of malignancy. I then underwent a core needle biopsy, and findings were consistent with a fibroadenoma.
It was harmless, but due to its size — five centimeters — most surgeons would recommend removal. It was described as a cosmetic procedure.
The weeks after the biopsy were defined by waiting. When I called to schedule a surgical consultation, I was told that removing the tumor would be an elective procedure. Elective doesn’t mean optional; according to Harvard Business Review, most elective surgeries fall between preventative measures like colonoscopies and essential procedures like cataract removal. An estimated 91 percent of surgeries conducted in the U.S. are elective.
Yet, hearing my surgery described as “elective” and “cosmetic” only reinforced the fear that I was making a big deal out of nothing. It was still late March, and my initial consultation was scheduled for May 5. The joy I would’ve felt for the end of the semester was tarnished by worry, which only worsened when the fleeting pain I had felt arrived with more consistency, spreading to my ribs. After a few frantic calls to the hospital in April, I realized that waiting to be seen in Durham was untenable and we reached out to a surgeon near home. By early May, I was home recovering from an excisional biopsy.
The pandemic had mixed effects on how I navigated my healthcare. On one hand, the end of in-person classes allowed me to be with my family and seek the care I needed without having to schedule it around my daily routine. On the other hand, the strain on hospitals in the early months of the pandemic created a lot of uncertainty around when I would actually be able to receive the treatment I now had the time to pursue. An estimated 28.4 million elective surgeries were delayed worldwide due to the pandemic, and that’s on top of delayed diagnostic procedures and pre-existing barriers to care. I was fortunate enough to find a non-hospital provider that could perform my surgery, but for others this may be out of reach, especially those in rural areas or areas with health professional shortages.
My experience merely encourages me to work toward a better healthcare system so that, in case of another crisis at the scale of COVID-19, fewer patients will fall through the cracks and providers will have the necessary resources to treat them.