Obtaining a cancer diagnosis is for most people a transformative event with considerable impact on their appreciation of life. The individuals’ social, biological and psychological status influences the level of appreciation of life. Uncertainty about the near and further-off future will determine the level of emotions including anxiety, while the chosen cancer treatment may further affect the physical quality of life (QoL). In order to inform patients on the effects of our medical interventions, and to make shared decisions for diagnostic and therapeutic actions, we try to measure the various aspects of QoL objectively. This reduction to measurable items unavoidably brings around the simplification of the complex QoL domain as a whole.

For men with low-risk prostate cancer (PCa), active surveillance (AS) is an accepted treatment modality. Stringent and less-stringent AS protocols are used worldwide, and their effects are monitored and analyzed in the Movember Foundation’s Global Action Plan, Prostate Cancer Active Surveillance (GAP3) database.¹ Because of limited resources for QoL registrations, data on QoL are predominantly derived from studies of individual centers or regions. Meta-analytic reviews complete a general picture. A number of studies have focused on the prospective use of QoL-instruments. The Expanded Prostate Cancer Index Composite (EPIC-26) provides prostate-specific outcome measurements on physical effects like continence and potency, while the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire focuses on the cancer-specific domain with questions on the social, cognitive, and psychological aspects of undergoing cancer treatment. Using these instruments, and comparing the various treatment modalities like AS, radiotherapy and surgery, an impression can be obtained about the variation in health-related QoL of patients that were monitored over time.

The editorial of Penson² in reflection on the systematic review of Lardas et al³ in 2017 pulls all of it together: evaluations of QoL comparing the effects of surgery and radiotherapy have hardly changed since 1993, and comparing those with AS series provides an expected result. QoL while on AS is better than any other treatment, and after surgery the QoL is worse for a period of 1–2 years. The observed levels between treatment modalities are statistically different, but when compared to a predetermined standard hardly relevant: “We should less focus on improvement of surgical and radiotherapeutic technologies (as all that did not bring us the expected improvement in QoL) but rather focus on how we bring this information in the process of shared decision making.”²

An important addition to the discussion since has been brought by the prospective HAROW study in Germany,⁴ which highlights the nonphysical performance of patients with low-risk PCa. Here the various elements of emotional, functional and social role, corrected for comorbidity, age and partnership support, have been analyzed over a 3.5-year period in 961 patients (405 on AS, 556 RP). The differences between AS and surgery were regarded not to be clinically relevant, though functionality, especially continence, was obviously affected more by surgery over time. The analysis of Hoffman et al in more than 1,800 patients confirmed this expected loss of functionality in patients who underwent surgery.⁵ The fast recovery and stability of the emotional aspects illustrate that the human mind adapts in many aspects to the new conditions. It takes patients who underwent surgery, however, 1–2 years to pick up their role (job) in society. These observations are worth sharing with our patients. Elements like societal or individual costs were not analyzed.

Little is known about efficient interventions to improve the QoL status of our AS patients. Though various suggestions for emotional support by psychologists or dedicated nurse-specialists have been mentioned and used in single-center AS-dedicated centers,^6–8 no comparative studies are available. Lack of evidence, however, does not justify neglect of supportive actions.

Of global scientific interest is how various cultural settings differ in their approach to dealing with a cancer diagnosis, subsequent treatment and therefore QoL levels in order to better understand the variety of patients in our multicultural cities. EPIC and EPIC-26 have been translated and validated in many languages and can therefore be used in, among others, European and Asian countries. In Japan the study of Hirama et al indicated an even higher QoL for men on AS compared to the general population.⁸ In Europe, the patient organization Europa Uomo illustrated in 2,943 men from 24 countries the striking decline in especially sexual function once active treatments were started.⁹

The variation in AS protocols might contribute to the impression of physicians and patients that uncertainty exists on the best method for safe surveillance. So far this uncertainty has not been reflected in a lower level of QoL or anxiety in men on AS compared to those actively treated or without cancer. However, the opposite might be true: a review of 23 studies indicates that we might underestimate the impact of anxiety because methodological concerns are not evident in quantitative analyses, contradicting previously published literature.¹⁰ The authors suggest that this may be due to the perceived inactivity of AS. The utilization of imaging modalities, such as magnetic resonance imaging, and the development of new biomarkers might address this uncertainty. In a recent poll during the digital meeting of the Active Surveillance Patients International in April 2021 on the needs of AS patients, the access to digital and reliable information on such developments was indicated as an important issue. While global numbers are important to improve selection and monitoring procedures, QoL for our patients is addressed best by information and individual approach.