Patients With Prostate Cancer May Experience Regret Years After Making Treatment Decision

More than one in 10 men with localized prostate cancer may regret their cancer treatment decisions, according to findings from a recent study.

Researchers from the study, which was published in JAMA Oncology, also found that regret may be linked to functional outcomes and patient expectations.

Although other studies have assessed regret in patients with prostate cancer, including some conducted in the 1990s, findings from this current study may indicate that regret is still present despite improvements in prostate cancer treatments over time.

“One of the key takeaways here is that rates of regret haven’t changed over time, it’s pretty consistent,” said Dr. Christopher J.D. Wallis, an assistant professor in the Division of Urology in the Department of Surgery at the University of Toronto and a urologic oncologist at Mount Sinai Hospital in Toronto and University Health Network in Toronto, in an interview with CURE®. “We (don’t) know exactly why that is, but (the findings) suggest a few things may be happening. First, our treatments may not be giving better outcomes than in the past – while we believe that we have improved, rates of regret haven’t changed. Alternatively, and more likely, is that patient’s expectations are rising over time as our treatments improve.”

Patient Expectations Have Changed

Wallis added that in the 1990s, the treatment for prostate cancer included radical prostatectomy, which was, at the time, “a big operation with significant blood loss, needing transfusions relatively commonly.” Currently, prostate cancer can be treated with robotic surgery, which has substantially less risk in terms of bleeding and less morbidity compared to how we did surgery in decades past

One of the key factors in looking at patients with prostate cancer is the long time that most men live after their diagnosis, Wallis said. As a result, men often need to live with the side effects of therapy for years and decades even.

“There is an increasing awareness of the importance of patient-reported outcomes,” he said. “Historically, in cancer surgery, we’re really focused on survival metrics, things like progression-free survival, overall survival. Those are clearly important, but they're not the only thing. In prostate cancer, I think it's particularly important because for patients with localized disease, the chance of dying of prostate cancer in the next five, 10, 15 years, even for those with aggressive localized disease, is very low. We really have to be cognizant of the impact we're having on patients’ lives in the many, many years we expect them to live after their cancer treatments. And so that led to the initial interest in what we call patient-reported outcomes.”

To assess the potential rate of regret after prostate cancer treatment, researchers analyzed data from 2,072 men (median age, 64 years) with localized prostate cancer who were treated with surgery, radiotherapy or active surveillance, when a cancer team monitors a patient and administers treatment when test results change or when the disease worsens.

At five years, treatment-related regret was reported by 16% of men who underwent surgery, 11% who underwent radiotherapy and 7% who underwent active surveillance.

“The real driver here was a disconnect between what patients thought outcomes would be after treatment and what they actually looked like, and it fits with how you conceptualize regret,” Wallis explained. “Essentially, the idea of regret is that you have to imagine an alternative situation, and your sense of regret comes from that comparison between where you are today and some alternative that you think is possible if you had made a different choice. Whether that was a different outcome with the same treatment, or maybe if I picked a different treatment, I would be in a different place. It's that comparison that creates the sense of regret. When we consider (regret) in that context, the better job we can do with patient counseling and getting patients’ expectations before surgery or before radiation to fit what we think is actually going to happen, the more we should be able to reduce regret after treatment.”

After researchers took into consideration differences in certain patient characteristics at the start of the study, overall, men who underwent active surveillance were less likely to experience regret compared with those who underwent surgery. Of note, this effect was not as notable when active surveillance was compared with radiotherapy.

“One of the things that bears highlighting is that the difference in regret, and what was associated with it, that changed based on the aggressivity of the cancer,” Wallis said. “We saw, for example, particularly the low-risk patients, those who chose treatments — either surgery or radiation — had more regret than those who had the surveillance approach. But when we went to the high-risk (patients), it was flipped, and the patients who chose surveillance had more regret. I think that's because regret may be caused by different things (whether related to cancer control or the side effects of treatment) for different patients.”

The type of treatment men underwent was not linked with regret after researchers took into consideration the mediation patients underwent with regards to their functional outcomes post-treatment. When researchers assessed all patient-reported functional outcomes, sexual dysfunction was significantly linked with regret compared with other functional outcomes.

Compared with men’s expectations before treatment, treatment efficacy, as perceived by the patient, and side effects were associated with regret related to one’s treatment. Several patient characteristics when they made their treatment decision were significantly associated with regret including social support, participatory decision-making tool scores and age. The regret patients reported at three years was similar to what was reported at five years.

Take Time to Make Informed Treatment Decisions

Wallis emphasized the importance of making informed treatment choices for patients.

“Getting more sources of information to triangulate a decision is helpful,” he said. “We saw, for example, social support here was protective against regret, as was how patients make their decisions with participatory decision making, (which is) how the patients engage in the decision-making process.”

To become more engaged in the treatment decision-making process, Wallis advises patients to get other consultations with physicians as well as to meet with others who have had prostate cancer and had treatment. “I would recommend that patients don’t just meet with a urologist; meet with a radiation oncologist to learn about radiation options. If you feel so inclined, don’t hesitate to get a second opinion,” he added. “Also, it’s important to talk with other patients who have been diagnosed with prostate cancer and had treatment. Patient support groups are great for that as are online resources from reliable sources.”

Wallis concluded that “time is on our side,” especially when it comes to patients taking their time to research treatment options to make their decision, which will hopefully reduce their risk for regret.

“We have lots of studies that show that three-, six-, nine-, even 12-month delays from diagnosis to treatment are unlikely to affect long-term outcomes,” he said. “I encourage all my patients to take the time necessary to think through the options, to talk to people, to get second opinions. It's very likely that for most patients treated for prostate cancer, they're going to be living 10, 15, 20 years after their diagnosis with the effects of the treatment choice they make, so taking a few months to make sure that that's the right choice for them I think is time well invested and well spent.”

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