Making the Most of Regret: Lessons From Patients
Written By: Narek Shaverdian, MD
Prostate cancer is the most common cancer among men. Most men in the United States are diagnosed with relatively early-stage disease. They face a difficult task sorting through the array of different treatment options to find the one treatment that fits best.
There is no shortfall of educational resources for patients. A simple Google search of “prostate cancer” results in over 33 million websites, refining the search to “best prostate cancer treatment” produces over 8 million results, and even narrowing the search to “prostate cancer radiation therapy” a patient would face over 1.5 million search results. Beyond the internet, patients have their physicians, families, friends, support groups, and print resources to rely on. Unfortunately, information can be contradictory and biased. Selecting optimal treatment is complex because men with early-stage prostate cancer are expected to live a long life, and all treatments carry a variety of side-effects, some which are avoidable and some which are unavoidable.
At UCLA Radiation Oncology, we sent a questionnaire to over three hundred men treated with three different types of radiation therapy for early-stage prostate cancer. We had two goals. First, to determine if one type of radiation treatment was associated with a lower risk of treatment regret. Second, we wanted to see if the patient’s primary information resource, relied upon most heavily for treatment selection, affected the incidence of treatment regret.
The men in our study were treated with dose-escalated intensity-modulated radiation therapy (IMRT), high-dose rate brachytherapy (HDR), or stereotactic body radiation therapy (SBRT). The average age was 68 (range: 44-79) and all patients were at least one year out from treatment before answering the questionnaire. Importantly, all participating men were Low-Risk and would have been eligible for active surveillance based on national cancer guidelines. We used a set of validated questions to estimate the percentage of men who now regret the treatment they received. Treatment regret is a well-studied, patient-centered outcome, and therefore was the main measure that we used to compare these different treatments and information sources.
Reassuringly, we found that most patients did not regret their treatment. However, 13% of men did endorse regret and the incidence of regret was significantly different between the three different radiation treatment options: 19% of men treated with IMRT regretted their decision, versus 18% of men treated with HDR brachytherapy, versus 5% of men treated with SBRT.
When we asked these regretful men what treatment they now wished they received, 72% now wish they had chosen active surveillance. Therefore, although all three types of radiation were equally curative and had similar toxicity profiles, there still are significant differences between these radiation treatments from patient’s perspectives.
We also found that the patients who failed to do enough study prior to selecting treatment were more likely to experience treatment regret. Men who believed that they had not learned enough about all treatment options before deciding on their treatment were 50 times more likely to endorse regret, and men who believed that they did not work mutually with their physician in their decision-making were 14 times more likely to regret their treatment.
Lastly, patients were asked to report their top information resource relied upon in their decision-making. As might be expected, most of these men, 48%, selected their treating radiation oncologist as their top information source, however, 23% of men selected their urologist, 16% of men selected the Internet, and 6% selected other patients. When we compared the rates of treatment regret between these different sources of information, we found 7% of men who cited their radiation oncologist as their top information source endorsed treatment regret. Similarly, 10% of men who selected their urologist as their top information source endorsed regret. Strikingly, however, 43% of the men who selected the Internet as their top information source endorsed regret, highlighting the potential dangers of internet-based resources
Men with Low-Risk prostate cancer are often placed in a very difficult position—choosing their own treatment. This is difficult because there are so many treatment options, stretching from active surveillance, across multiple radiation and surgical options, hormone therapy, to other investigational treatments. Although the rate of treatment regret that we found was low, there is much to learn from the experiences of these previously treated men. First, there is much more to keep in mind throughout the treatment selection process than simply achieving a cure. Second, although you may find exactly what you want to read on the Internet, it may not be completely true. And finally, there may be nothing more important than upfront, thorough, and honest discussions be-tween men and their physicians before deciding on treatment.
Narek Shaverdian, MD, is currently a chief resident in radiation oncology at the David Geffen School of Medicine at UCLA. He completed his undergraduate studies at the University of Pennsylvania and completed medical school at the University of Wisconsin.