Purpose Although improvements in perioperative care have decreased surgical morbidity following radical cystectomy for muscle invasive bladder cancer (MIBC), treatment side effects still have a negative impact on patients’ quality of life (QOL). This study examines patients’ unmet needs along the illness trajectory. Methods and Materials Thirty patients (26.7% women) treated with cystectomy and urinary diversion for MIBC participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network website between December, 2011 and September, 2012. Data were collected through individual interviews. The interviews were audio-taped and transcribed. Qualitative analyses of transcribed data were used to explore key unmet needs. Results At time of diagnosis, unmet informational needs were predominant, consisting of insufficient discussions of these topics: urinary diversion options and their side-effects, self-care, recovery process, and medical insurance. Unmet psychological needs related to depression and worries about changes in body image and sexual function were reported. Post-surgical unmet needs revolved around medical (e.g., pain, bowel dysfunction), and instrumental needs (e.g., need of support with use of stomal appliances, catheters, and incontinence). During survivorship (i.e., from 6 to 72 months following surgery), unmet needs centered around psychological (i.e., depression, poor body image, sexual dysfunction) and instrumental support (e.g., difficulty adjusting to changes in daily-living). Conclusions Meeting patients’ needs is imperative to ensure patients’ adequate involvement in their healthcare, and to enhance post-surgical QOL. An effective support provision plan should follow changes in patients’ needs.

Background Prostate cancer survivors with a rising prostate specific antigen (PSA) level have few treatment options, experience a heightened state of uncertainty about their disease trajectory that might include the possibility of cancer metastasis and death, and often experience elevated levels of distress as they have to deal with a disease they thought they had conquered. Guided by self-regulation theory, the present study examined the cognitive and affective processes involved in shared decision making between physician and patients who experience a rising PSA after definitive treatment for prostate cancer. Methods In-depth interviews were conducted with 34 prostate cancer survivors who had been diagnosed with a rising PSA (i.e., biochemical failure) within the past 12 months. Survivors were asked about their experiences and affective responses after being diagnosed with a rising PSA and while weighing potential treatment options. In addition, patients were asked about their decision-making process for the initial prostate cancer treatment. Results Compared to the initial diagnosis, survivors with a rising PSA reported increased negative affect following their diagnosis, concern about the treatability of their disease, increased planning and health behavior change, heightened levels of worry preceding doctor’s appointments (especially prior to the discussion of PSA testing results), and a strong reliance on physicians’ treatment recommendations. Conclusions Prostate cancer survivors’ decision-making processes for the treatment of a rising PSA are markedly different from those of the initial diagnosis of prostate cancer. Because patients experience heightened distress and rely more heavily on their physicians’ recommendations with a rising PSA, interactions with the health care provider provide an excellent opportunity to address and assist patients with managing the uncertainty and distress inherent with rising PSA levels.