In 2021, I was selected to be a participant in the inaugural Patient Perspectives program. COVID preempted the conference and the Patient Perspectives program was put off until the following year. Attending AUA2022, where I presented on “Diagnostic Uncertainty in Small Renal Masses,” was an amazing experience, so when I was asked to submit an update on my abstract, I was thrilled to return to the AUA Annual Conference not just as an advocate attendee but again as a contributor.

Coming to AUA2023 as a veteran Patient Perspectives program participant was a lot less scary than it was the first time (Figures 1-4). I knew what to expect at the conference itself, but writing the abstract wasn’t any easier as it was still a very different type of format for me. But again with help from the team at AUA and Dena Battle, the president of KcCure (Kidney Cancer Research Alliance), an advocacy organization devoted to helping patients diagnosed with kidney cancer, I was able to get the abstract, entitled “Diagnostic Uncertainty in Renal Masses: Patient Support Community Update and Expansion,” completed.

My abstract gave an update about the group I created for patients with benign renal masses. I started the group because when I was first diagnosed with renal masses I was told with great certainty that I had RCC. I was, of course, happy and grateful when my tumors turned out to be benign but wondered how it was that these tumors couldn’t be better diagnosed prior to surgery. I thought other people must have those same feelings so I started the group. And it grew. Recently the group was expanded to include patients with small renal masses who hadn’t had treatment yet, so they didn’t have a definitive diagnosis yet or were on active surveillance. As I experienced last year, the enthusiasm of doctors about the group I started and the research I presented was very empowering.

I was amazed at the breadth of topics presented by patients at this conference. I enjoyed meeting these participants and learning about their advocacy efforts. I learned so much from the other participants, even if their topics didn’t pertain to my situation. It is especially rewarding to meet other patients and advocates to hear what their issues are and how they are advocating for better care and treatments. I think I can speak for all of us in saying we felt supported and valued.

Having an opportunity to discuss findings from surveys and interactions with over a thousand participants in the small/benign renal mass group with doctors from around the world was an experience I will never forget. And while I gained so much knowledge from discussions with these doctors and from attending various sessions throughout the conference, I think the information I and other patients have is incredibly useful and even vital for doctors to hear.

The continued enthusiasm shown to me regarding my research and the group I run specifically for patients with benign and/or small renal masses, especially those recently diagnosed with a small renal mass who haven’t been definitely diagnosed yet, is very inspiring. I am so grateful to the AUA for coming up with this idea and expanding and improving the program this year. I hope that AUA will continue this program, as it shows that they truly value the patient’s voice and that the patient’s perspective is valued.