Was AS your best choice after all?
Who's sorry now? Program on April 6.
By Howard Wolinsky
Are you happy with your choice of therapy after being diagnosed with prostate cancer?
On average 13% of us aren’t. And that includes men on active surveillance (AS).
It’s a phenomenon called “decisional regret.”
In other contexts, it is referred to as “buyer’s remorse,” the second thoughts you may have after buying a house, a car, and so on.
Maybe not surprisingly, sexual dysfunction, but not other patient-reported functional outcomes, was significantly associated with decisional regret, Christopher Wallis, MD, PhD, of the University of Toronto, and colleagues reported in November in the JAMA Network. [JAMA Oncol. https://jamanetwork.com/journals/jamaoncology/fullarticle/2786406]
[See below: Wallis is speaking on this topic at the AnCan Virtual Active Surveillance Support Group program’s First Wednesday on April 6.]
Wallis reported in JAMA in November: “In this prospective, population-based cohort of 2,072 patients with prostate cancer, 183 (16%) of those undergoing surgery, 76 (11%) undergoing radiotherapy, and 20 (7%) of those undergoing active surveillance expressed treatment-related regret at five years.
“Compared with active surveillance, patients who underwent surgery were significantly more likely to experience regret, whereas those who underwent radiotherapy were not associated with an increased likelihood; posttreatment functional outcomes were associated with mediations in this finding.”
Patient expectations play a big role.
“The rates of regret appear to differ between treatment approaches in a manner that is mediated by functional outcomes and patient expectations. Treatment preparedness that focuses on expectations and treatment toxicity and is delivered in the context of shared decision-making should be the subject of future research to examine whether it can reduce regret,” said Wallis.
The men in the study were all younger than 80, with an average age of 64. Nearly half of them had slow-growing cancers with a low risk of recurrence or spread after treatment. The rest were in intermediate- or higher-risk categories.
More than half the men chose surgery regardless of their cancer risk at the time of diagnosis. Most of the others chose radiation, and about 13% of the men — the majority of them in low- or intermediate-risk categories — chose active surveillance. Periodically, the men filled out questionnaires asking if they thought they might have been better off with a different approach, or if the treatment they had chosen was the wrong one.
Hardly a surprise: The researchers found that a loss of sexual function is a big part of regret
Randy A. Jones, PhD, RN, of the University of Virginia School of Nursing, Charlottesville, noted in an invited editorial, “Patients who were treated with surgery were more likely to report regret than men who had undergone radiotherapy or active surveillance. Wallis et al also found that a change in sexual function was significantly associated with regret, whereas other functional outcomes (eg, urinary incontinence and bowel symptoms) were not.”
The study stresses the importance of counseling and shared decision-making. Jones said, “The authors mention that the disconnect between patients’ expectations and their treatment outcomes often drive treatment-related regret. Despite an increase in the development of decision aids to decrease decisional conflict and regret, few are used within clinical settings and are truly interactive (ie, among patient, caregiver, and clinician). There is a need for greater connections and better communication among patients, caregivers, and clinicians to allow open discussion, counseling, and an understanding of realistic expectations and adverse effects that are possible during treatment.”
Researchers didn’t find an increased risk of treatment-related regret among Black men. The authors state that this may be owing to a small study sample size of Black men. However, as also was acknowledged, other studies have demonstrated this phenomenon, Jones said.
What do you think? Are you regretful about your choice? Answer The Active Surveillor Quick Survey on regret and active surveillance: https://www.surveymonkey.com/r/7SFBHKF
Wallis will be speaking at 8-9:30 p.m. Eastern on April 6 to the AnCan Virtual Active Surveillance Support Group moderated by James Schraidt, an AnCan AS moderator. It’s a drop-in program in the Barniskis Room. For instructions to join: https://www.gotomeet.me/AnswerCancer
Schraidt, past chair of Us Too and a board member of ZERO: The End of Prostate Cancer, has had his own battle with decisional regret after his surgery for low-risk prostate cancer. I wrote about him in Medpage in 2018: https://www.medpagetoday.com/special-reports/apatientsjourney/73386
Don’t miss this program: Top docs—including Dr. Laurence Klotz, who named AS; Dr. Peter Carroll and Dr. Peter Albertsen, who helped develop the approach, and Dr. E. David Crawford, who believes it’s time to move beyond AS— will be exploring the future of Active Surveillance at 11 a.m. Eastern April 22. Register here ASAP: https://zoom.us/meeting/register/tJEtfuuqrzwtHNPuqzkigx65YBk8vV-teUdy
Regrets may have been minimized if the whole person care model was followed. Pre-screening of the persons emotional state would provide the opportunity to seeing the person would benefit from counseling and a deeper explanation of the treatment being considered.