Hoffman RM, Lo M, Clark JA, et al. Treatment decision regret among long-term survivors of localized prostate cancer: results from the Prostate Cancer Outcomes Study. J Clin Oncol. 2017;35(20):2306-2314.
Follow-up survey data gathered from a large, population-based cohort study known as the Prostate Cancer Outcomes Study originally published in the Journal of the National Cancer Institute.1
934 men treated in various US cities between October 1994 to 1995 who were part of a cohort who filled out baseline and 15-year surveys. They were diagnosed with localized prostate cancer, 59% classified as having low risk disease, diagnosed before the age of 75. Of the 934 total, 696 were treated with initial radical prostatectomy, 146 had initial radiation therapy, and 92 were treated with either watchful waiting (no treatment) or androgen-deprivation therapy within 1 year of diagnosis.
Multivariable logistic regression analyses were used to identify factors associated with regret. A 15-year follow-up survey was used to determine several key factors including:
- Socioeconomic status
- Treatment decision regret
- Informed decision-making
- General- and disease-specific quality of life
- Health worry
- PSA concern
- Life outlook
Survey response rate at the 15-year follow-up period was 69.3%. Most of the respondents had undergone radical prostatectomy, with 10.8% of the survey responses coming from those who were treated conservatively with watchful waiting or androgen-deprivation therapy. Overall, less than 15% expressed treatment decision regret with the highest amount (16.6%) of regret coming from those who underwent radiotherapy. Also, the men who were older and felt they made an informed treatment decision had the least amount of regret. The men who reported having symptoms with bowel function, sexual function, and greater PSA scores had the most regret.
Interestingly, these same researchers surveyed the same Prostate Cancer Outcomes Study participants 2 years after treatment so there is now 2 sets of data points to consider: 2-years (2003 study)2 and 15-years (2017 study). In the 2-year follow up, 2,365 men were evaluated and 59.2% were delighted or very pleased with their treatment choice. At the time of the 2-year follow-up, a large percentage of the men were cancer free (66.4%) and did not have urinary (64.2%), bowel (60.5%), or sexual dysfunction (65.9%) issues. In the second 15-year follow up study, a validated instrument to more accurately measure regret was added. This demonstrated that regret actually increased over time. In both studies, self-reported treatment regret was fairly low, which is good news. But that’s not the only interesting data that comes from this most recent study.
Regret is highly associated with lack of knowledge regarding adverse treatment affects such as bowel, urinary, and sexual dysfunction that may negatively impact quality of life after treatment.
This study, as well as previous research, demonstrates that regret is highly associated with lack of knowledge regarding adverse treatment affects such as bowel, urinary, and sexual dysfunction that may negatively impact quality of life after treatment.3,4 In related research, Davison et al found that men who assumed a more active role in their treatment decisions felt less regret.5 Hacking et al demonstrated that men who used a navigator to help with the treatment decision-making process had significantly less regret 6 months after treatment compared to those who did not use navigation.6
In this study, men who treated their cancer more conservatively with watchful waiting, which is also called active surveillance, and had normalized PSA without recurrence experienced the least amount of regret potentially due to lack of treatment side effects and quality of life issues. These researchers see this as an opportunity to promote comprehensive information about the active surveillance option to men with localized prostate cancer. The research does, in fact, demonstrate that active surveillance had similar outcomes and mortality when compared to initial radiotherapy and surgery. Due to lack of treatment side effects, active surveillance has emerged as a standard management option for men with very low and low risk prostate cancer.7,8 The researchers in this present study feel their findings “are timely for men with low-risk cancers who are being encouraged to consider active surveillance.”
As a radiation oncologist, it is important for me to note that toxicities of treatment can vary over time. For example, this cohort was treated before the advent of Intensity Modulated Radiation (IMRT) which radically improved both short- and long-term side effect profiles of radiation therapy. Surgical advances have also occurred over time, such as robotic prostatectomy. Additionally, active surveillance as a discrete protocol did not exist formally in 1994-95. Regardless of these therapeutic improvements, it is important to realize that sometimes the conventional treatments we administer may cause long-term quality of life issues, such as urinary incontinence or sexual and bowel dysfunction. It’s also challenging to anticipate long-term effects that may not resolve. I work with patients to determine their risk tolerance, personal and psychological values, and other quality of life considerations to help them determine the right path. A correct path for a 50-year-old healthy man is likely different than the path for an unhealthy 78-year-old. We go over the options and discuss factors that are completely under their control—like how they eat, move their bodies, and manage their stress. We discuss that there is good data that these controllable factors can influence prostate cancer progression rates.9
The clinical take home message is that all men deserve to be well-informed about the complexities and nuances associated with each prostate cancer treatment option. Patients must be counseled to make decisions based on many factors, including treatment side effects, quality of life issues, recurrence risk, healthy lifestyle practices, and other aspects of care to ensure the final decision is congruent with the patient’s values and expectations.10 When we help men diagnosed with prostate cancer look at their treatment options through this lens, we can reduce regret in both the short-term and long-term.