Patient Story ID: 1419792

Background

In 2015, I was told by a urologist that I definitely had renal cell carcinoma (RCC) and would most likely lose my kidney. Pathology after surgery revealed benign oncocytomas.

As a result of my experience, I joined with KCCure (the Kidney Cancer Research Alliance) to launch a support community for patients with benign renal masses. The group was initially launched in April 2018 and quickly grew to over 700 members.

In addition, I also moderate the KCCure 1-2-3 community, a group of over 2,000 patients diagnosed with localized cancer. Over time, we began to see a disturbing new trend related to diagnostic uncertainty. Nearly 40% of new requests to join were coming from patients with small renal masses who had been told with a high degree of certainty that they had cancer based on imaging alone.

Approach

Joining a community of people who already had a confirmed diagnosis of cancer resulted in misinformation due to statistical bias. As an example, when a new patient would join and ask, “Did your renal mass turn out to be cancer?,” the responses were all “Yes.” This caused heightened anxiety among new patients and reduced opportunities for balanced discussions about active surveillance.

To address this growing problem, we expanded the mission of the renal mass community to include patients with small renal masses who have not yet had surgery or who are on active surveillance for small renal masses. Our goal was to create a more diverse crowd of patients, including those who had benign masses.

Maintenance

Since my previous abstract, the renal mass group has grown by 57% from 700 members to over 1,100 members. Of the new members joining, 46% are people who have been diagnosed with small renal masses (under 4 cm) who have not yet had surgery, 29% have been diagnosed with angiomyolipoma, 16% have elected active surveillance for small renal masses, and 10% have been diagnosed with oncocytoma. The community averages 36 unique posts per month, which on average receive 13 comments and 25 reactions. While the majority of patients do ultimately go on to receive surgery for their masses, alarmist messages urging people to “rush” into surgery have been drastically reduced, creating a safer environment for more balanced discussions about treatment options including active surveillance.

Quality of Life

Diagnostic uncertainty in renal masses is a significant problem for patients who are diagnosed with small renal masses. Creating wise crowds in social communities can improve quality of life by reducing statistical bias and alarmist messaging that may contribute to overtreatment and increased anxiety.