Patient-reported toxicity after treatment for prostate cancer (PC).

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221 Background: PC patients may be at risk for significant late effects after treatment, the impact of which may difficult to evaluate in the clinical setting. This Internet based study evaluates patient perceptions of toxicity after treatment for PC. Methods: Patient-reported data was gathered via a convenience sample frame from PC survivors voluntarily utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com, the tool allows survivors to enter data regarding diagnosis, demographics, and treatments, and provides customized guidelines for future care. During use of the tool, PC survivors are queried regarding late effects associated with specific treatments, and asked to answer “yes,” “no,” or “I don’t know.” They are also asked to score urinary and sexual symptoms using adapted scales. Results: Of 4378 survivors using this tool from 4/10-7/11, 203 (5%) had a diagnosis of PC. Median diagnosis age was 59 and median current age 63. 47% reported having undergone radical prostatectomy (RP) and 53% radiation (RT). RT was delivered via x-ray (80%), brachytherapy (15%), protons (3%), and combinations (3%). Hormonal treatment was delivered to 50%. Erectile dysfunction was reported by 65% of PC survivors using this tool, 80% of those having undergone RP, and 52% of those RT. Of men reporting ED, 97% reported that they could have an erection prior to PC treatment. Survivors treated with RP most commonly reported urinary incontinence (42%) and dry ejaculation (27%). Survivors treated with RT reported urinary incontinence (14%) and chronic diarrhea (10%). Most (75%) survivors reported they would share the care plan with their healthcare team; of 25% who reported that they would not, the most common reason was “I did not think they would care.” Conclusions: Survivors using this tool anonymously and voluntarily report significant toxicity after PC treatment, including ED and urinary incontinence. Not all survivors appear comfortable discussing these issues with healthcare providers. This tool offers a unique way for survivors to report their experiences; the data reported here may be of significant impact in future study of quality of life, patient counseling and survivor care.