Introduction: The gold-standard for localized renal cell carcinoma (RCC) is partial or radical nephrectomy. However, recurrence remains a challenge after curative treatment and patients´ experience and perception as well as the role of medical teams during this time is unclear. Methods: The Kidney Cancer Research Alliance (KKCure) developed a survey with the support of a multidisciplinary team of urologic surgeons, medical oncologists and patient advocates. Patients with RCC were surveyed via website, mailing lists and social media platforms between 07/2022 and 09/2022. Anonymized IP address tracking was used to prevent multiple responses from the same patient. 1,062 patients with RCC participated, of which 623 patients self-identified with localized RCC (Stage I-III) at initial diagnosis. Results: The median age of the cohort of patients with localized disease (n=623) was 61 (19-89) years. During follow-up, 184 (29.5%) revealed a recurrence. In the majority of patients (81.42%) recurrence occurred within 5 years after surgery, but 34 (18.58%) patients revealed recurrence of RCC more than 5 years after surgery. Most patients reported that recurrence was observed during routine follow-up scans, but recurrence was also revealed due to symptoms in 22 cases (11.96%) and found incidentally when undergoing scans for other reasons than RCC (n=16, 8.70%). The majority of patients (n=108, 61.02%) stated that they did all they could to try to prevent recurrence, while 16 (9.04%) disagreed. 61 (34.08%) patients agreed that their medical team has prepared them for recurrence and 68 (37.99%) patients disagree. 116 (65.17%) patients agreed to have a medical team in place. Only 42 patients (23.33%) felt rushed to find a medical team at the time of recurrence. Conclusions: The varity of recurrence time points in this large real-world collective show the importance and challenges of follow-up scans especially more than 5 years after surgery. Medical teams play a crucial part during recurrence and can prepare patients for this event. SOURCE OF Funding: None
