Agreeing on Active Surveillance Terminology

Medical language is filled with technical terms that are virtually incomprehensible for many patients because in many cases they have Latin or Greek roots. Even when doctors are speaking English, however, they aren’t all using the same terms for the same thing. Take, for example, the expression Active Surveillance (AS). AS is often understood by patients as “no treatment” but this is not correct. Instead, it means holding off on invasive treatment until the cancer warrants it, so monitoring is required to recognize when the right time has arrived. Today, AS is probably the most commonly agreed-upon term for holding off on a treatment decision after a diagnosis of low-to-intermediate risk prostate cancer (PCa).

But there are other names for delaying treatment: Watchful Waiting (WW), Expectant Management (EM), and Observation. Some doctors use these terms interchangeably, while others have specific definitions or descriptions that are based in the clinical conditions by which the doctor identifies appropriate patients for deferred treatment. There are many patient factors, and not all doctors are influenced by the same factors, or combination of factors – plus, physician bias also plays a role. Here is a menu of criteria that can affect a doctor’s view of when it’s safe to delay treatment:

  • Age
  • PSA
  • Gleason score
  • Tumor stage
  • Genomic analysis of aggression
  • Multiparametric MRI results
  • Life expectancy
  • Willingness and ability to follow a monitoring protocol, including repeat biopsies
  • Psychological tolerance for leaving cancer in the body
  • Other existing health factors (e.g. heart disease, diabetes, etc.)
  • Treatment preference

Thus, if two doctors get into a discussion about AS, each of them might think the other is talking about the same criteria, but there’s a pretty good chance they are not thinking identically.

Such inconsistency is a challenge to physicians, patients, and researchers. “An urgent need exists for uniform terminology regarding AS in order to aid communication and collaboration among research groups around the world. The purpose of this study was to reach international consensus on definitions of terms often used in AS for carefully selected men with localized, well-differentiated prostate cancer.”[i] To address this problem, a consortium of international PCa experts embarked on a consensus project using a model called the Delphi method.[ii] This involves arriving at the greatest agreement by going through several rounds of filtering out minority ideas or opinions. The good news is, consensus was reached on 61 terms such as overtreatment, tumor progression, PSA velocity, risk stratification, etc. However, the news is less rosy when it came to pinning down AS itself. For instance, “…how AS should be practiced was discussed, including aspects such as whether a serum PSA test should be performed every year or, for instance, every 5 years, and what the best strategy for deciding to stop the AS protocol is. Clearly, despite the availability of considerable consensus on the key terminology, continued research is necessary to gain a deeper understanding of these clinical aspects of undertaking and practising [sic] AS.”[iii]

Statistics tell us that the use of AS has increased since the US Task Force recommended against widespread PSA screening. On the other hand, we are now starting to see a rise in the number of patients being diagnosed with Gleason 7 or higher PCa because they weren’t screened. No doubt, the fact that we are not yet able to confidently determine which patients have insignificant or indolent PCa that will likely never progress vs. those who harbor a dangerous “silent killer” that may rapidly progress and metastasize is a large part of the professional caution over generating a possibly simplistic definition of AS.

At the Sperling Prostate Center, we wholeheartedly support the idea that before recommending AS or a treatment, as much detail about a patient’s PCa as possible should be brought to light. The diagnosis should include PSA and its variants (e.g. free PSA, PSA velocity, etc.), genomic analysis depending on risk factors such as ethnicity and family history, 3T multiparametric MRI performed by experienced staff and interpreted by expert readers, MRI-guided targeted biopsy, and at least 2 opinions on the biopsy results by top pathology labs. We also recognize that, for AS patients, mpMRI scans at regular intervals along with bloodwork is vital for determining if/when a follow-up targeted biopsy is warranted. And we welcome improved agreement on the meaning of words that play a guiding role in determining when AS is appropriate, and when to trigger definitive treatment.

[i] Bruinsma S, Roobol M, Carroll P, Klotz L et al. Expert consensus document: semantics in active surveillance for men with localized prostate cancer – results of a modified Delphi consensus procedure. Nat Rev Urol. 2017;14:312-22.

[ii] Ibid.

[iii] Ibid.