The choice of active surveillance: patient and partner perceptions


Two recent papers in the journal Psycho-oncology offer us interesting insights into patients’ (and their partners’) current perceptions about the role of active surveillance in the management of low-risk, localized prostate cancer.

Volk et al. (a team based at the M. D. Anderson Cancer Center in Houston, TX) describe information gathered from structured interviews from 15 patients who were on an active surveillance protocol and another, similar, 15 patients who had elected immediate treatment with radiation therapy or radical prostatectomy.

The data from this study seem to show rather clearly that the men at this center who had elected active surveillance “got it” (in terms of the potential to avoid or at least defer treatment) and that the men who had elected immediate treatment were primarily driven by the desire to get rid of the cancer and “be cured.” However, Volk et al. do state that the men who chose surgery or radiation as opposed to active surveillance “were less specific” about the active surveillance testing regimen than the patients who did.

The men who had elected active surveillance in this study

  • “Described it as an organized process with a rigorous and reassuring protocol of periodic testing”
  • Recognized that active surveillance came with the “potential for subsequent and timely decision-making about treatment”
  • Saw the process as “prolonging their current good health and function with treatment still possible later”
  • Understood that trusting their physician’s ability to monitor the cancer with care was key to the process
  • Knew that they were “buying time” without experiencing adverse effects of treatment, could afford to waiting for the possibility of better treatments in the future, and saw their cancer as being very low risk
  • Understood the need and the importance of being able “to justify their choice to others because it seemed contrary to the impulse to immediately treat cancer”

O’Callaghan et al. (a multi-centric team in Melbourne and other Australian centers) describe information garnered from structured interviews with 21 men, and 14 partners of these men, who had either elected radical treatment immediately after diagnosis or had been on active surveillance for at least 3 months. Active surveillance had been the  the recommended treatment for all 21 patients.

The data from this study show a somewhat different picture. They report that:

  • “Treatment decisions reflected varied reactions to prostate cancer information, regularly described as contradictory, confusing, and stressful.”
  • “Men and partners commonly misunderstood [active surveillance] but could describe monitoring procedures.”
  • “Partners often held the perception that they were also on” active surveillance.
  • “Men and partners usually coped with [active surveillance] but were sometimes encumbered by treatment decision-making memories, painful biopsies, ongoing conflicting information, and unanswered medical questions.”

They also note that some of the patients preferred that their doctors selected the treatment strategy for them and that radical treatment was commonly selected when cancer progression was feared or medically indicated.

Volk et al. conclude that:

Men fully informed of their treatment options for localized prostate cancer have a comprehensive understanding of the purpose of [active surveillance]. Slowing the decision-making process may enhance the acceptability of [active surveillance].

In contrast, O’Callaghan et al. conclude that:

To reduce distress frequently experienced by men diagnosed with [low risk prostate cancer] and their partners during treatment decision making and ongoing [active surveillance] monitoring, the following are needed: improved community and medical awareness of [active surveillance]; consistent information about when radical treatment is required; and consistent, unbiased information on treatment options, prognostic indicators, and side effects. Regularly updated decisional support information/aids incorporating men’s values are imperative.

It is probably important to emphasize that the data and the conclusions reached in these two studies are not in any way contradictory. As a society we are all going through a massive re-learning process necessary to understand that “having cancer” is not, after all, necessarily an immediate indicator that all patients must “have treatment”. That cultural re-education process is complex, difficult, and rife with issues like taboos and 100-year-old social drivers.

It is going to take time for the idea that it is “okay” and “normal” to use techniques of expectant management for low-risk forms of cancer to seep through society — not just for the management of prostate cancer, but also for some forms of other common cancers, like low-risk, localized forms of breast cancer. It would not surprise The “New” Prostate Cancer InfoLink if it took another two or three generations (i.e., 50 to 75 years) before we had really absorbed the acceptability of expectant management and active surveillance.

3 Responses

  1. The most important part of the interviews has been omitted. What method was used to prepare for the interview?

    Are not the results as much a study of the success of educational methods, as studies of patient attitudes?

    One of the social drivers you mention that must change is having physicians give the basics of treatment options. Many really are not great communicators; many do not have a non-ego basis of their advice; and, perhaps most importantly, their patients are just not ready to absorb all that data in the time frame available.

    The old mockery of teachers — “Those who can do; those who can’t teach” — really is much wiser than current practice.

  2. Dear Mike:

    I would be pretty sure that there is a great deal of discussion of the actual “education” given to patients in the full texts of the two articles. We have not seen those full texts.

    I also suspect that patients going to M. D. Anderson for primary treatment are a highly self-selecting group of motivated men, and may represent a rather different demographic that those in the Australian multi-center study.

    Having said that, you are, of course, not wrong. In general, the current state of communication between physicians and patients regarding appropriate options for the management of localized prostate cancer for an individual patient remains poor (at best). And the medical community needs to make greater efforts to ensure that appropriate education of individuals about their treatment options is conducted by people who have recognized skill in the education of patients (which is not, normally, in any way, associated with a person’s skill as a surgeon or a radiation oncologist).

  3. BUILDING AWARENESS OF THE HARMFUL TUG OF CULTURE

    The culture we have all lived in has emphasized early treatment for cancer in general and prostate cancer in particular. Our friends, neighbors, associates, and loved ones who almost always have not been involved with the disease and research on active surveillance usually do not realize that it is safe and effective. My experience is that the vast majority are strongly subject to the old culture of going for a cure as soon as possible and fully turning their care over to their doctors.

    I occasionally give talks about the disease, its prevention, active surveillance, treatment options, and the like, and I have been looking forward to the following exercise to help build awareness of the pull of culture. I have the materials but have not done this yet.

    First, a new, unopened package of small plastic or paper cups is opened and passed through the group so that each member can take a cup. Then, after some preliminary words indicating anyone is free to opt out at any time, the audience members are instructed to move their tongues around in their mouth, feeling the saliva. The speaker points out that saliva is important, and we are unaware of its presence in our mouths, though it has a nice consistency. Then audience members are invited to spit some saliva in their new, clean cups. Next, the coup de grace, audience members are invited to drink the saliva they have just spit into those nice clean cups,

    It’s likely that most of the audience will feel a degree of revulsion, if not with the spitting in public, then with drinking the “spit.” At this point the speaker reviews the facts that the cup is new and clean and that the saliva felt just fine in the mouth just moments before. Then it is time for the lesson: in our modern era, living with low-risk prostate cancer with diligent surveillance but without treatment is a good, sound option, and we should not be misdirected by obsolete conventional wisdom.

    I’ve gone through this exercise in a class on breaking out of paradigms. It makes its lesson effectively.

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