Boswell, Timothy

Background/Objectives: Pediatric rhabdomyosarcoma is a rare and poorly understood disease. Patients and parents can have varying experiences including barriers to care, time to treatment, and treatments offered. Here, we report on patient experiences regarding their care of pediatric rhabdomyosarcoma. Methods: Two separate online parent support groups were invited to participate in a survey. The survey included questions that sought to collect patient demographics, history of rhabdomyosarcoma, treatment timelines, and barriers to care. Results: A total of 215 surveys were completed. The average time from diagnosis to treatment was 12 days (SD = 14). Only 26% were offered fertility preservation prior to treatment. For patients with recurrence, an average of 75 days passed between detection of recurrence and treatment re-initiation. Patients traveled to centers with a dedicated sarcoma program in 52% of the cases. A total of 42% of parents sought a second opinion. Of those, the majority had to wait between one week and one month to be seen by another expert. Conclusions: The data collected from the survey suggests there are several opportunities to improve care among patients with pediatric rhabdomyosarcoma. Many patients may benefit from more efficient rhabdomyosarcoma referral networks, delivering patients to experts who can quickly begin multidisciplinary treatment.

Objective To describe the natural history, reconstructive solutions, and functional outcomes of those men undergoing pubectomy and urinary reconstruction after prostate cancer treatment. Patients and Methods This study retrospectively identified 25 patients with a diagnosis of urosymphyseal fistula (UF) following prostate cancer therapy who were treated with urinary reconstruction with pubectomy. This study describes the natural history, reconstructive solutions, and functional outcomes of this cohort. Results All 25 patients had a history of pelvic radiotherapy for prostate cancer. The median (interquartile range [IQR]) time from prostate cancer treatment to diagnosis of UF was 11 (6, 16.5) years. The vast majority of men (24/25; 96%) presented with debilitating groin pain during ambulation. Posterior urethral stenosis was common (20/25; 80%), with 60% having repetitive endoscopic treatments. Culture of pubic bone specimens demonstrated active infection in 80%. Discordance between preoperative urine and intraoperative bone cultures was common, 21/22 (95.5%). After surgery, major 90‐day complications (Clavien–Dindo Grade III and IV) occurred in eight (32%) patients. Pain was significantly improved, with resolution of pain (24/25; 96%) and restoration of function, the median (IQR) preoperative Eastern Cooperative Oncology Group Performance Status (ECOG PS) was 3 (2, 3) vs median postoperative ECOG PS score of 0 (0, 1). Conclusion Endoscopic urethral manipulation after radiation for prostate cancer is a risk factor for UF. Conservative management will not provide symptom resolution. Fistula decompression, bone resection, and urinary reconstruction effectively treats chronic infection, improves pain and ECOG PS scores.

SAGE-Journals-Accessible-Video-Player 10.1089/vid.2020.0112.M1 sj-vid-1-vid-10.1089_vid.2020.0112