Home Prostate / Prostate Cancer How Black Cancer Patients Are Treated, and How It Needs To Change

How Black Cancer Patients Are Treated, and How It Needs To Change

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‘What would have happened if my parents did not have an oncologist-in-training as their daughter? What happens to the Black patients?’

Photo: Stígur Már Karlsson,Heimsmyndir/Getty Images

My first prostate cancer patient was my father. He is the man who taught me to be frugal. He is parsimonious until he gets to talking, and then all you want to do is listen. His laugh is boisterous and genuine. It is pure magic when it rises from someone who otherwise seems so stern. He worked two jobs when I was very little, one as a United States Postal Service mail carrier and the other delivering papers for a now-defunct newspaper in Denver. His father left his mother and eight siblings when he was young when they lived in Wichita, Kansas. My father saw his father again when he was a senior in high school. His father showed up unannounced at one of my father’s football games. “Don’t worry about me,” he said to his father. “I’m grown now. I’m fine. Take care of my little brothers and sisters.” His father died when my father was a little younger than I am now. My father was the one who drove to a small town in California to settle the affairs. My father was the one I called as I lay sobbing on the floor of my apartment, just having heard the news that my lung biopsy showed cancer.

My mother first called me to talk about my father’s health when I was a second-year medical student. She said that he’d had trouble going to the bathroom. He went to see a urologist, and they were recommending a prostate biopsy. He had initially agreed, but then changed his mind, and now refused outright. She was scared and wanted to know what to do. Well, not what to do, exactly, but how to be. How to cope.

I asked a few mentors about the situation since I still had very little practical medical knowledge. Prostate cancer was common and so likely, they said. He should go along with a biopsy, but first, perhaps try to find a doctor he liked better or trusted more for another opinion. And, if he still didn’t want to have a biopsy or more testing, it was hard to say how things might go from there. Prostate cancer could move slow or it could move fast. I told her all of this. I do not know exactly what she relayed to my father. Maybe nothing. The point of her reaching out to me wasn’t really to change his mind. If he’d wanted that, he could have called me himself. I don’t know what conversations went on between them, married for around a quarter-century, best of friends. I only know that we were all trying our best.

My father went to junior college to play football. There was a scholarship for tuition and football “boosters” to pay the rest of his way. He was injured and that was that, educationally. He married young. He wasn’t yet 18, and so his mother had to sign the marriage certificate. He had two daughters, divorced, and drove west. He met another partner and had a third daughter. Sometime later, when he was just a little younger than I am now, he met my mother. She had moved south and west for college from Minneapolis to Denver, the town where her father was born. She had finished college when they met. They had two children, me and my younger brother. The four of us grew up together.

My mother didn’t call me about my father’s health again until I was a second-year resident. I had finished my intern year that summer and was settling into my first rotations in radiation oncology. I was on call, it was about six o’clock in the morning in Boston, and I was waiting for the elevator to see an inpatient I’d been called about overnight. It was four in the morning in Denver. Even in her greeting, her voice had a wrongness to it. “Your father is in the hospital. He was in so much pain and so we went to the emergency department.” She said that she understood something about a biopsy that would need to be done.

He then began to yell to my father the plan for the day as if he was trying to cross an imagined or real communication barrier with pure volume.

I should have just thought to leave immediately, but medical culture had made me wary of being seen as lazy, not suitably self-sacrificing. I remembered the time that one of our medical school instructors, a prominent full professor and nationally known medical educator, had yelled at the classroom full of 150 or so of us medical and dental students about the fact that some students were missing lectures. He really began to lay into us as he told us that he had learned that his mother had died when he was a resident. He worked through the entire shift. He was proud that he did not get coverage.

I reasoned that I would wait until after morning rounds, call the hospital directly, and try to talk with my father’s team. I saw my patient, and went to chart rounds, the meeting where we review the radiation plans for patients starting treatment that week. I presented my plans. “How are you?” my supervising doctor asked. “My father… is sick.” I began to cry for the first time. He told me to leave because I was replaceable in Boston, but not in Denver. “I did the same thing when my parents were sick.” So I got on a flight to Denver, packing clothes that would make me look official, including my black fleece jacket with my degrees and a hospital logo, and took a ride-share car directly from the airport to the hospital where my father was admitted.

My father was in bed, with oxygen cannulas in each nostril, an IV in one arm, and a pulse oximeter on the pointer finger of the opposite hand. He looked tired, but not the kind of worrying sick I’d learned to recognize as urgent. My mother’s whole being relaxed when she saw me. It was past eight in the evening, and so I knew there wouldn’t be anyone for me to talk with about my father until morning. I had to keep repeating to myself that this was not my hospital, and my father was not really my patient, and so I couldn’t examine and adjust his probes and pumps as I might in Boston. I also had no records and no imaging to help me determine what might be going on. So I comforted them as a daughter and went home to rest before what I felt would be the most important morning rounds of my life.

The next morning, I arrived with the timeliness and preparation of a pre-rounding subintern. I got the always-better-than-you-expect coffee in the lobby and headed to my father’s room to wait. An intern came in first. I gently plumed for details that would be her administrative duty: biopsy, imaging, discharge. The hospitalist entered next. This was her first morning meeting my father, as he’d been admitted by the night team. She kindly let me peek over her shoulder as she “drove” through the scans. An enlarged prostate. One very large lymph node. No obvious bone lesions. All relatively good news. She left and we waited for his oncologist.

When his oncologist entered, it was clear that he didn’t see me at first. He strode in toward the foot of the bed, stopped a foot or so away, extended his arm to rest his hand on the rail. He then began to yell to my father the plan for the day as if he was trying to cross an imagined or real communication barrier with pure volume. After a few moments, he took the time to crane his neck in my mother’s direction and we locked eyes. I smiled brightly. My mother had clearly told him that I was a physician and that I would be coming. His voice began to tremble despite his clear effort to remain calm. Instead of dictating the next steps, it suddenly became a conversation. He asked what my father wanted, and my father asked me what I thought. Things that would have been glossed over with just a few words were explained with care. We all agreed to a biopsy of the large lymph node, a bone scan, and starting on a medication to reduce hormone levels that day. When the oncologist left, my mother looked at me and said “Is that how doctors talk to each other?” It was clear that she meant “with respect.” I hung my head.

“Shekinah, they told us it was everywhere,” my mother whispered to me.

My father only had one visibly enlarged lymph node with metastatic prostate cancer. His bone scan was “clear” — there weren’t any areas that looked like prostate cancer. His pain was a mystery, but probably a combination of the lymph node and the enlarged prostate and regular hip arthritis. He didn’t need oxygen and was steady on his feet. He was discharged the next morning.

I learned later that the doctors overnight had told my mother and father that the cancer had caused broken bones and that was why he had such pain. “Shekinah, they told us it was everywhere,” my mother whispered to me. The oncologist had even added that castration — not chemical castration, but surgical — was the best treatment. This is something I have never heard said to any patient with metastatic prostate cancer in the “elite” environments of my training. What would have happened if my parents did not have an oncologist-in-training as their daughter? What happens to all of the patients that are not seen as equal partners in their health care choices? What happens to the Black patients?

We are used to this. I am used to this. It is everywhere. “It” is the first time I remember being called the worst word in the English language. I know it’s the worst because it is a word that I cannot write here. And the second time. And the third. “It” is every patient who asks me again and again if I am sure that I am a doctor, despite an ID tag with “DOCTOR” written in bold hanging around my neck. It is the staff in my residency program who could never seem to keep straight the three Black female residents, congratulating us all on each other’s milestones and calling us all by each other’s names. It is one department chair asking if I’m sure I want to live in this or that city, another confiding that they’re not sure why the only prior Black faculty member left but surmising that it must have been an issue of “fit,” and a third asking if I would be asking that they care for more of the area’s Black patients. (To the final question, my answer was, “well, how many do you treat now?”) It is students from my husband’s former school making hateful “jokes” about my then-seven-month-old son, and me, on a Snapchat thread and that thread being brought by a student of color to the administration. It is me meeting with the president of the school and asking what would be done to help the community be a safe place for Black students and Black community members, and being told that I was being patronizing. It is all that happening just a year after another student had been kicked out for calling a fellow student that word that I cannot write here. It is why #Blackin______ or #Blackat_______ hashtags exist for any and every institution or field. It is why #BlackLivesMatter is considered controversial.

It is hard to take seriously any accounts of medical “mistrust” that don’t address an untrustworthy health care system. A health care system that has failed and continued to fail Black people without any end in sight.

My father was the person I called, of course. And, of course, he had some thoughts on this. “When you live up there, a couple like you all,” my father started. He meant that I am Black and my husband is white. He went at this obliquely, and continued, “when we would drive through the South, my father would wear his army uniform. So that we would be able to stop for food from the back of restaurants. For gas.” He paused. He returned to the situation of my son, my husband, our family, “As long as they don’t touch you. You’ll be okay.” He has taught me this kind of pragmatism. The kind that perhaps has made me both stand up to what I should and stand for what I shouldn’t.

My father is doing well, now four years after that hospitalization. He wishes that someone had told him that when he initially was told to get a biopsy that he could have chosen radiation instead of surgery if he needed treatment. He was afraid of the surgery. And if the surgeon spoke with him the way that oncologist in the hospital did, it’s hard for me to imagine that fear as irrational. That is why it is hard to take seriously any accounts of medical “mistrust” that don’t address an untrustworthy health care system. A health care system that has failed and continued to fail Black people without any end in sight. It has gotten better, I am told. I find it hard to draw much comfort from that statement.

Back to the present moment. I am now the oncologist, just starting my first real job, just starting in North Carolina. I am driving toward Graham, a city where a march to the polls was met with pepper spray. I am driving toward a billboard that says “Jobs not Mobs!” I am driving before it is light out to cover a clinic that I’m not sure has ever seen a Black nurse or Black doctor. I didn’t ask because I didn’t want to know the answer.

“I’m thinking I might get a new car,” I tell my husband, the day before the drive.

“Don’t you like your car?” he says.

“I do,” I say, and hesitate. “But it’s getting old… and I don’t want to have any reliability issues.” He nods. He doesn’t need me to say more. My gas tank is full this morning. I arrive at the clinic as the sun is coming up. My day is pleasant enough, everyone is very kind to me. But it’s hard to focus. I leave as soon as the last patient finishes. I want to make it home before the sun goes down.

We should accept nothing less than a complete paradigm shift. Incrementalism will not change the totality. Representational tinkering will not save us.

And this is the problem. This does touch us. It extends itself into our bodies. It affects every decision. It becomes part of our physical health and our health care outcomes. Part of our psyches and souls. How can we think of prostate cancer as biologically aggressive in Black men when we have yet to exonerate the overwhelming social context? How can we consider recruitment, retention, and promotion of Black faculty in academic medicine as an individual issue to be solved with an isolated mentorship program? It is everywhere. We can continue to amass an accurate account of the burden. But we have to acknowledge that we need a systematic plan of action. Data collection is a delay tactic, at this juncture. We have performed the necessary tests. We have to move forward.

And how do we do that? First, I will say that it is not in my current job description to figure this out. But, I would say that we should accept nothing less than a complete paradigm shift. Incrementalism will not change the totality. Representational tinkering will not save us.

The oncology systems in the United States do not serve any of us particularly well. Care is expensive, delayed, and lacking empathy. Hierarchy prevents team-based care and shared decision-making. This is detrimental for all patients. For Black patients, it is often deadly. We must abolish the systems that have gotten us here, and instead establish systems of care. If we do this, if we center Black patients, the cancer care system will serve those of us who have been most excluded. This is equity. And this would be a service to all of us.

Do we need more Black doctors? Well, I don’t think that this is the right question. Or, it is a question among better, more pressing questions. If we had a system of medical training that was in service of the needs of our patients and communities, that wasn’t biased and exclusionary, that didn’t have the equivalent of a poll tax or examination or grandfather clause at every step, I believe that we would have more Black doctors. I want a system that is for, by, and in service of Black patients. A system where I can work, joyful. Where I would never need to count my father as among my patients.

https://elemental.medium.com/what-happens-to-black-cancer-patients-9b1be6b3d150?source=rss——-1

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