Figure 1. Gottsleben prior to Patient Perspectives program. Photo courtesy of Dena Battle, President/Founder of the Kidney Cancer Research Alliance.

Figure 2. Gottsleben presenting during the Patient Perspectives program. Photo courtesy of Dena Battle, President/Founder of the Kidney Cancer Research Alliance.

Figure 3. Gottsleben presenting during the Patient Perspectives program. Photo courtesy of Dena Battle, President/Founder of the Kidney Cancer Research Alliance.

Figure 4. Conclusions from Gottsleben’s abstract. Photo courtesy of Dena Battle, President/Founder of the Kidney Cancer Research Alliance.

When I first found out about the Patient Perspectives program that was going to be introduced at AUA2022, I was so excited. I felt like it was an opportunity for patients to have a voice in how their diseases are treated and managed. But my excitement quickly turned to anxiety when I thought about the process of submitting an abstract to a medical organization. While I’m in the education field and as a school librarian often help students with their research, the thought of producing an abstract that was worthy of being presented at a medical meeting was daunting at the very least. But I felt that my experience and those of other patients with benign renal masses was a story which urologists needed to hear, so I persevered.

I wrote about my experience starting an online support group for patients with benign renal masses. When I was first diagnosed with renal masses, I was told with great certainty that I had kidney cancer. When my tumors turned out to be benign, I was, of course, grateful and happy, but I was also filled with a lot of confusion and even anger—why was I told with such certainty that I had kidney cancer? I was sure that if I had these feelings, there had to be others who were feeling the same way. I had met Dena Battle, the president of KCCure (Kidney Cancer Research Alliance), and she encouraged me to create an online support group for patients with benign renal masses. I created the first and so far only group exclusively for patients with benign renal masses. The group has now been expanded to include patients with small renal masses who either are on active surveillance or haven’t had treatment yet so haven’t received a definitive diagnosis.

The writing of the abstract was difficult as it was a completely different format for me, but I had guidance from both the AUA team members assigned to this new program and from Dena. I was hopeful my abstract would be accepted, and when it was, I was ecstatic. I had been to other AUA annual meetings but never to present, so that was a new experience and I wasn’t sure if doctors would turn up to listen to what patients had to say (Figure 1). When it was my turn to present, I couldn’t believe the number of doctors in the audience and was even more amazed at the enthusiasm shown for my research (Figures 2 and 3). I had a number of doctors approach me afterward asking for information about the group to share with their patients and also asking if they could correspond further to gather additional insights.

I think it is a tribute to the AUA that they conceived the idea of asking patients to contribute original research and to then have them present that research at their Annual Meeting (Figure 4). The AUA demonstrated to both clinicians and patients that the patient’s voice is important and the perspective of the patient is valued.