You have accessJournal of UrologyKidney Cancer: Localized: Surgical Therapy II (PD11)1 Apr 2020PD11-11 SURVEILLANCE AND COMMUNICATION OF SURGICAL RESULTS IN LOCALIZED RENAL CELL CARCINOMA, RESULTS FROM A LARGE INTERNATIONAL PATIENT SURVEY Dena Battle*, Adam Stern, Cristiane Bergerot, Brian Shuch, Ithaar Derweesh, and Michael Staehler Dena Battle*Dena Battle* More articles by this author , Adam SternAdam Stern More articles by this author , Cristiane BergerotCristiane Bergerot More articles by this author , Brian ShuchBrian Shuch More articles by this author , Ithaar DerweeshIthaar Derweesh More articles by this author , and Michael StaehlerMichael Staehler More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000000845.011AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Surgical resection remains the standard of care for localized Renal Cell Carcinoma (RCC). Approximately 75 percent of RCC patients will be diagnosed with localized disease and between 20 to 40 percent will face recurrence after surgery. Despite these high rates of recurrence, consensus on surveillance strategies is lacking. We sought to survey this patient population to determine their understanding of their diagnosis, follow-up experience and assess anxiety that they experience following a diagnosis. METHODS: Data were drawn from an international survey generated by KCCure, a non-profit patient advocacy group. Survivors were invited to participate in the study via social media (e.g., Twitter, Facebook) between 07/19 and 09/19. 412 of 1150 participants were diagnosed with localized disease (56% stage 1, 19% stage 2 and 24% stage 3), with a median time since diagnosis of 18 months. The survey included questions related to demographic and clinical characteristics, histology, stage, surveillance intervals, imaging modalities and distress (1-item measure, ranging from 0 to 10, cutoff of 4). Kruskal-Wallis test was used to compare anxiety prior to surveillance scans with distress as a continuous variable. RESULTS: 32% of patients had a biopsy prior to their surgery. 18% did not have a clear understanding of their diagnosis and did not feel confident about a plan going forward. 42% do not know their T-stage. 22% do not know their grade. 8% do not know their histological subtype. 34% were seeking a second opinion after surgery. Frequency of follow-up care was every three months in 30%, every six months in 43%, annually in 22%, bi-annually in 2% of the patients. 2% were of surveillance until symptoms would arise and 1% did not receive further follow-up visits. Imaging modalities were: CT scan with contrast in 74%, CT scan without contrast in 31%, MRI in 23%, chest x-ray in 33%, PET scans in 4% and ultrasound in 18% of the patients. 2% did not receive any radiological scans.40 percent of patients experienced increased anxiety for a week or more prior to surveillance scans, 34 percent experienced increased anxiety for a few days prior to scans and 12 percent experienced increased anxiety for one day prior to scans. 13 percent reported no increased anxiety. Anxiety was significantly increased to 6.1 on the NCCN distress scale compared to 4.8 at baseline (p>0.001). CONCLUSIONS: Patients lack information about their diagnosis. Surveillance is not standardized, and multiple modalities are used for scanning. Patients suffer from severe anxiety prior to scans. Further research is needed to reduce distress and increase quality of communication. Source of Funding: None © 2020 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 203Issue Supplement 4April 2020Page: e257-e258 Advertisement Copyright & Permissions© 2020 by American Urological Association Education and Research, Inc.MetricsAuthor Information Dena Battle* More articles by this author Adam Stern More articles by this author Cristiane Bergerot More articles by this author Brian Shuch More articles by this author Ithaar Derweesh More articles by this author Michael Staehler More articles by this author Expand All Advertisement PDF downloadLoading ...