In this article, we turn our attention to Robert Ginyard (Figure), whose commitment to advocacy and patient empowerment has made an indelible impact on the prostate community. During our conversation, Mr Ginyard reflected on the significance of sharing lived experiences and fostering community among patients navigating a prostate cancer diagnosis. He spoke candidly about the emotional challenges and resilience required to find purpose beyond treatment, emphasizing the importance of visibility and honest dialogue in reshaping patient care, especially in the underserved African American community.

Our discussion delved into the nuances of survivorship, particularly the importance of representation and the need for advocacy tailored to diverse populations. Mr Ginyard thoughtfully highlighted how the act of sharing one’s story not only brings comfort to newly diagnosed patients but also spotlights disparities in outcomes and access to care. He described the Patient Perspective Program as a powerful platform—one that amplifies unheard voices, cultivates empathy among clinicians, and inspires hope within the broader patient community.

Mr Ginyard’s advocacy is not confined to speaking engagements or organizational boardrooms; he has championed initiatives that focus on bridging the gap between patients and providers, ensuring that marginalized voices are not only heard but actively included.

His willingness to address difficult subjects—such as stigma, masculinity, and the intersection of race and health—has opened critical pathways for conversation in both clinical and community settings. By foregrounding these issues, he urges professionals and patients alike to challenge taboos and prioritize holistic, culturally responsive care.

The conversation naturally shifted to the evolving landscape of patient advocacy, particularly in the realm of health equity. Mr Ginyard articulated the pressing need for ongoing dialogue about social determinants of health—a theme that has become increasingly central to the mission of organizations like ZERO Prostate Cancer (he and I served on the ZERO board). By promoting collaboration across disciplines, he believes the community can address systemic barriers and champion innovative solutions that benefit those who have historically been underserved.

Read more about Robert Ginyard and his story here. 

Editor’s note: This interview has been edited for clarity.

Tom Hulsey: What was most important to you when selecting a urologist?

Robert Ginyard: I was referred to my current urologist, which helps in terms of not having to seek one out on my own. I wanted a urologist who understood prostate cancer and how it affects African American men. Additionally, I wanted the urologist to possess the knowledge of the latest treatments and technology, and to understand how the various treatments might have an impact on my quality of life after treatment.

Hulsey: How important was it for you that your urologist have a pleasant bedside manner?

Ginyard: While bedside manner is important, I also wanted a urologist who was competent to successfully treat my prostate cancer; a physician’s willingness to answer questions, explain options without judgment, and genuinely listen made all the difference. For me, feeling respected and understood established the trust I needed to move forward with confidence. The interpersonal qualities of a urologist—compassion, patience, and clarity—are critical components of care.

Hulsey: You mentioned bedside manner: is that something that can be taught?

Ginyard: Yes, I think it can. I believe certain aspects of bedside manner can certainly be taught; skills such as active listening, empathy, and clear communication foster trust and comfort for patients. There’s also an authenticity that comes from genuinely caring about people, which is much harder to teach. Some clinicians naturally possess an intuitive sense of compassion, while others develop it through experience and a willingness to learn from their patients. Ultimately, a blend of training and personal growth shapes how physicians connect with those they care for.

Hulsey: How do you think these qualities influence the patient’s experience during and after treatment?

Ginyard: They make a world of difference. When a patient feels seen, heard, and respected, it eases anxiety and builds a foundation for healing—not just physically, but emotionally and mentally as well. I’ve found that when physicians show patience and kindness, patients are more likely to voice their concerns honestly and adhere to recommended care. This connection doesn’t just affect the clinical outcome; it can transform the entire journey.

Hulsey: You’ve mentioned the importance of open conversation around difficult topics. How do you encourage men to engage in these discussions?

Ginyard: It starts with vulnerability. When I share openly about my own experience, the fears, the challenges, even the uncomfortable realities, it often invites others to lower their guard. Creating safe spaces, whether at support group meetings or community forums, encourages men to ask questions and speak about their worries. Sometimes, just hearing that they’re not alone is enough to inspire openness.

Hulsey: As a prostate cancer survivor, you are front and center when it comes to sharing your cancer journey. Why are you so adamant about sharing your story?

Ginyard: I’ll borrow a quote from a fellow prostate cancer survivor and advocate, Phil Shulka. He said, “A doctor can tell you what cancer is; I can tell you what it’s like to have it.” My prostate cancer journey has played a major role in helping me find my purpose in life. And that is helping men and their families navigate a prostate cancer journey. I must admit, initially, I had no intention of becoming an advocate—speaking on topics about intimacy, incontinence, and even the mental health aspect of my diagnosis and subsequent treatment, and life thereafter. However, my spirit was so stirred, and my life was transformed in such an impactful way, I couldn’t remain silent. I had to try to save lives and comfort those who were battling the disease.

Hulsey: Are African Americans getting the message about prostate cancer?

Ginyard: Based on feedback I’ve received from men who have attended forums where I’ve spoken, I’d have to say yes. However, I’m only one man, we need more men to speak up and share their stories and experiences so that we can have an impact on the next generation of men and their families. It’s our silence on the topic of prostate cancer and other forms of cancer that kills many men prematurely.

Hulsey: As an African American, what gives you hope about prostate cancer advocacy efforts?

Ginyard: I’m seeing more support groups and nonprofit organizations started by men who are passionate to put an end to this disease and help men improve their quality of life who are currently battling prostate cancer. I must say that I’ve really been impressed by the number of African American urologists who are extending their outreach efforts beyond the hospital corridors by spending time in the communities in which they serve, educating men about prostate cancer and overall good health and wellness.

Hulsey: What were your 3 biggest takeaways from being part of the Annual Meeting? What would have been helpful to know beforehand?

Ginyard: (1) I was highly impressed by the number of attendees, and the people dedicated to the field of urology. (2) I met and connected with friends and fellow advocates from various parts of the country. (3) I wish I had stayed an extra day to sit in on workshops and explore the exhibit hall to meet vendors.

Related Content

Reflections From AUA2025: An Interview With Paul Nelson

Patient Perspectives: An Interview With Dr Mitchell Sokoloff

A Youngish Prostate Cancer Diagnosis in a Risk-Tolerant Patient

No Laughing Matter: Mental Health Support for Prostate Cancer Patients