The AUA Annual Meeting, held April 26-29, 2025, included the Patient Perspectives Program (PPP) for the fourth year. Participation in the PPP involves sharing their story with the urologic community, and AUANews is proud to publish all 13 stories. 

For the next several months in AUANews, PPP presenters will be highlighted. AUANews Patient Perspectives Associate Editor Tom Hulsey speaks to them about their experience at AUA2025.

In this first installment, I am honored to speak to Paul Nelson. I have known Mr Nelson since 2019, when we served together as consumer reviewers at the Department of Defense Congressionally Directed Medical Research Programs Prostate Cancer Research Program.

Mr Nelson addresses a topic that continues to need more focus for the overall well-being of cancer patients—mental health. Mr Nelson’s motivation for participating in the AUA PPP (Figure) is to include the mental health aspect of patient care in the discussion (holistic care), which he discusses in his article published as part of the PPP, “Mental Health and Cancer Care.” Mental health plays an essential role in the overall well-being of individuals navigating cancer. Prostate cancer impacts a man’s identity and masculinity, as well as the emotional toll of treatment side effects. Mental and emotional health are vital components of healing and long-term wellness.

Since his own prostate cancer diagnosis, Mr Nelson has been in patient advocacy work for 16 years. His passion for mental health has increased over the years because he realized it is such an overlooked aspect of patient care in our current medical system. Hallmarks of our health care system include lots of specialists, and a doctor only has so much time with the patient. Mr Nelson wants the doctor to focus on what they do best and create mental health resources within the medical clinic to support the physician’s work.

Mr Nelson is a clinical sex therapist and President of the Erectile Dysfunction Foundation. Through Mr Nelson’s work, he is active with the AUA, Sexual Medicine Society of North America, and the American Association of Sexuality Educators, Counselors, and Therapists.

Read more about Paul Nelson and his story here.

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

Tom Hulsey: How were your interactions with your urologist?

Paul Nelson: I went with a urologist who had done many surgeries and was highly rated. The surgery went well, but I do wish he had asked what MY concerns were. In hindsight, I felt like he answered the questions he thought I wanted to ask. While the focus is on a cure, the cost of that cure through quality-of-life issues was never really explored. He assured me that everything would be great on the other side of surgery. Well, not everything was great, and I was left scrambling. He told me to just wait, but waiting did not help.

Hulsey: Was there any part of your treatment that seemed inaccessible or difficult?

Nelson: The most difficult thing was feeling as if I did not have a say in the treatment sequence and just had to follow “First cancer, then continence, then sexual function.” More patient education on HOW to help the healing process would have been very helpful. Lack of education leads to lack of empowerment.

Hulsey: How did your interactions with your urologist and/or urology practice impact you?

Nelson: I wish the interactions had been more personal. I wanted to feel as though I was an active participant in the experience. I eventually realized that I was just going to him for PSA tests, but he was a surgeon. I decided to switch and have my family doctor do my PSA tests, which was a lot easier.

Hulsey: What support was helpful for you after your surgery?

Nelson: Through online sleuthing, I found Us TOO and a local support group. The online communities were incredibly helpful. There are many of them, and talking to other patients about their treatment journey was very helpful. The online support was actually more helpful to me because the in-person groups tended to rightly focus on terminal patients and men who were fighting for their lives. That was a bit overwhelming for me at 47!

Hulsey: What was your biggest takeaway from being at the Annual Meeting?

Nelson: There is amazing work being done by some incredible patients and patient organizations!

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Read Paul Nelson's story and hear from other PPP participants here.