Beyond the numbers: trust, voice, and the fight against prostate cancer

Black individuals in the United States continue to experience the highest rates of prostate cancer diagnosis and death. Even though the prostate-specific antigen (PSA) test, a validated diagnostic used to diagnose prostate cancer, has helped cut overall prostate cancer deaths in half since the 1980s, that same benefit has not reached everyone equally. For many Black individuals, barriers to screening and trust in the health system still stand in the way of early detection.

A new study published in JAMA Network Open and led by researchers at Fred Hutchinson Cancer Center and the University of Washington listens closely to the voices of Black individuals and the doctors who care for them. What the researchers found reveals not just a gap in medical knowledge, but also in communication, trust, and connection.

Between 2021 and 2023, Dr. Yaw A. Nyame and Jenney R. Lee, along with their team, spoke with 29 Black individuals across the Pacific Northwest and surveyed 63 physicians, including primary care providers and urologists. Through these conversations, a complex story emerged that is shaped by missing information, uneven medical guidance, and deep feelings of being unseen or unheard in health care.

“I wanted to have a PSA test,” one participant recalled. “When I asked the physician for the test, he said it wasn’t necessary. He didn’t want to put me through any unnecessary procedures… And then about November, I had a little incontinence for about 2 weeks… And once I took the [PSA] test, that’s when they found out my [PSA] numbers were extremely high...that’s when we discovered I was at stage IV.”

Another man reflected on how rarely prostate cancer even comes up in health discussions: “We talk more about cholesterol, heart attacks, strokes, high blood pressure… for African Americans especially. But when you say prostate cancer for men, it’s not as out in the forefront as these other causes of death in minorities.”

Over and over, participants described a sense of being left out of the conversation about their own health. Some said they had to insist on getting screened. Others said they didn’t know they were at higher risk until it was too late. “That’s information that’s never been put out there,” one man said. “I was shocked when they told me I had it.”

On the doctors’ side, the study found wide differences in how physicians think about PSA testing. Nearly all the primary care providers said they followed the U.S. Preventive Services Task Force (USPSTF) guidelines, which don’t provide specific recommendations for high-risk groups like Black men. In contrast, most urologists relied on the American Urological Association (AUA) or American Cancer Society (ACS) guidelines, both of which recommend earlier or more individualized screening for people at higher risk. That difference matters. While three-quarters of urologists believed PSA testing helps prevent prostate cancer deaths, only 6.5% of primary care providers said the same. And those beliefs affect who gets offered the test.

For the participants in the study, however, the issue wasn’t just about science or statistics, it was about relationships. Many said they struggled to trust their doctors or to feel understood. “I made it a point to get a Black primary care doctor,” one participant explained. “If my primary care wasn’t Black, then this is just a crapshoot.” Others spoke about wanting to be cared for by someone who recognized the weight of history. “There are disparities within health care that make it more difficult for people of color to get the type of resources or information, or have the trust that they need,” another participant said.

Trust, the researchers emphasize, isn’t a side issue—it’s central. Conversations about prostate cancer screening can be deeply personal and sometimes uncomfortable. Without mutual trust, those conversations often never happen at all. Yet only one primary care provider and one urologist in the study identified as Black, reflecting a broader national reality: Black physicians make up only about 5% of the U.S. medical workforce.

The researchers argue that the solution starts with evidence and empathy. Updating national screening guidelines to include explicit recommendations for high-risk groups like Black men could help close the information gap. But just as importantly, health systems must create space for trust-building and culturally informed communication. As Dr. Nyame explained, “This study shows that we need to help bridge the gap between patients and providers around prostate cancer risk and screening benefit.”

That bridging work, the researchers emphasize, is as much about listening as it is about leading—recognizing that guidelines, trust, and representation must evolve together. Because behind every statistic is someone’s father, brother, or friend; someone who might have lived longer if they had been screened sooner or listened to more carefully. As one participant put it, “If we can get the word out more that this is important for us as Black men to get screened, I think more guys will opt to have that done.”

This project was made possible in part by the Andy Hill Cancer Research Endowment Fund; Specialized Programs of Research Excellence grant from the National Cancer Institute; and the US Department of Defense, Office of the Congressionally Directed Medical Research Programs. This project was also supported by the Washington State Urology Society.

Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium Member Dr. Yaw Nyame contributed to this research.

Lee, J. R., Morehead, D., Young, B., Tolbert, V., Masembe, J., Britt, G., Neuenschwander, L., Schuppe, K., Pelman, R., Johnson, D., Henderson, V., Darst, B. F., Egwuatu, P., Kim, S. M., Wolff, E. M., Gore, J. L., & Nyame, Y. A. (2025). Patient and Physician Perceptions of Prostate-Specific Antigen Testing Among Black Individuals. JAMA Network Open, 8(9), e2530946.