Introduction and Objectives

In 2015, a computerized tomography scan revealed 3 masses on my left kidney. I was told by a urologist that I definitely had renal cell carcinoma and would most likely lose my kidney. I sought out a second opinion and found out that a partial nephrectomy could be done. The pathology revealed benign oncocytomas. I felt frustrated about the way that my initial diagnosis and treatment were communicated. Because I was told with such certainty that I had cancer, I found it difficult to reconcile my emotions after surgery. Very little research has been done to assess the experience of patients diagnosed with benign renal masses. I wanted to know if other patients had similar experiences.

Methods

Recognizing an unmet need, I joined with KCCure, an evidence-based, patient-centered kidney cancer advocacy organization. In April 2018, I created a closed Facebook support group for patients with benign and/or small renal masses. Prior to admission, members answer questions verifying their diagnosis. We use various measurements to quantify growth of the group, including activity rate, calculated as active membership/total membership over a 28-day period, and engagement rate, calculated as posts plus comments plus reactions/average active membership over a 28-day period.

Results

The group has an active membership of 700+ members. Survey results from patients with benign masses indicate the following breakdown: oncocytoma (47%), angiomyolipoma (43%), benign cysts (6%), oncocytic tumors (3%) and other benign lesions (1%). Analytics show that 86% of members are very active. Members are highly engaged, with average monthly activity rates of over 500%. Conversations reveal many members were told with a high degree of certainty (80%–95%) that they had renal cell carcinoma prior to surgery. Although patients experienced initial relief after learning they did not have cancer, anxiety rates remain high. Patients frequently express concern about not having structured followup. As a patient said, “Being told you have cancer doesn’t get erased.”

Conclusions

Hearing the word “cancer” may alter patients’ risk perception, contribute to overtreatment, increase anxiety and reduce confidence in medical care post-surgery. Social communities not only provide emotional support for patients, but they also represent novel data streams for research. We are working on surveys to quantify patient experiences and concerns following detection and treatment of benign lesions. More research is needed to investigate the impact of uncertainty in the diagnosis of renal masses.