Do patients on active surveillance have anxiety and distress?

One of the issues that worries people about active surveillance and other forms of “non-interventional” management for prostate cancer is whether patients will suffer unduly from anxiety and distress while living with “untreated” cancer. We know that there are patients who have been on such protocols long-term who do not; we also know that there are some patients who find the idea of living with “untreated” prostate cancer too difficult to deal with.

A new article by van den Bergh et al., based on monitoring of men being managed with active surveillance in the Netherlands, has now quantified these feelings, along with their associations with various psychologic, medical, demographic, and decision-related factors.

The study enrolled 150 men with recently diagnosed prostate cancer who participated in a prospective, protocol-based active surveillance program. All patients received a detailed questionnaire which allowed evaluation of multiple factors that affected how the patients “felt” about active surveillance as a form of treatment, including: decisional conflict, depression, generic anxiety, and prostate cancer-specific anxiety. Scores were developed for these factors and were compared with reference values and historic data from published literature.

The results of the study were as follows:

  • 129/150 patients (86 percent) completed and returned the questionnaires.
  • Based on these 129 respondents:
    • 81 percent (104/129) scored better than reference values for clinically significant uncertainty regarding the treatment decision.
    • 92 percent (119/129) scored better than reference values for depression.
    • 83 percent (107/129) scored better than reference values for generic anxiety.
    • 93 percent (120/129 scored better than reference values for prostate cancer-specific anxiety.
  • All scores were comparable to or more favorable than those of men (reported in literature) who underwent other treatments for localized prostate cancer.
  • Perception of an important role for the physician in shared decision-making was associated with higher decisional conflict.
  • Better physical health was associated with lower risk for depression.
  • Neurotic personality was associated with higher risk for depression, with generic anxiety, and with prostate cancer-specific anxiety.
  • Higher PSA levels were associated with higher levels of prostate cancer-specific anxiety.

The authors drew two conclusions from this study:

  • “Men on protocol-based [active surveillance] mainly reported favorable levels of anxiety and distress. “
  • “A neurotic personality score was associated with unfavorable effects.”

The “New” Prostate Cancer InfoLink would suggest that these data may help to alleviate physicians’ and patients’ initial concerns that active surveillance is “too difficult” for most patients to handle. It seems to us that many patients are perfectly capable of “living with” low-risk prostate cancer if they are appropriately informed and monitored. Certainly there will be patients for whom this is not the case, but this study suggests that these patients are in a significant minority (of perhaps 10-15 percent of the total).

We would like to see this study replicated in a larger, US-based population, but van den Bergh and his colleagues appear to have provided a sound basis for putting aside the generic idea that most men “can’t handle” living with low risk disease, especially if they have other, competing risks for mortality.

6 Responses

  1. Yikes! It was bad enough finding out that I had prostate cancer.

    Now I find out that I’m neurotic to boot …

  2. There are drugs you can take for that condition!


  3. This is the third study that says the same kind of thing.

    I believe that very few men who have conventional treatment, reassured by the oft-repeated statement that early stage prostate cancer is curable, realise that they will have PSA tests to look for failure for the rest of their lives (or at least 10 years). That seems to create even more anxiety than men who have understood why they may not gain any advantage from immediate treatment and that properly monitored AS does not signficantly increase their risk factors.

  4. The side effects of overtreatment make waiting and watching VERY attractive to me.

  5. Sitemaster,

    A 30+ year life expectancy (from sites like ) didn’t seem to help either.

  6. Maybe part of the anxiety that patients have is translated from the anxiety that physicians experience. I recently read somewhere that men who are given information in a balanced way prior to biopsy but after a PSA result that may indicate cancer, they do not have the anxiety that men experience if cancer and treatments are discussed after a positive biopsy. Maybe our education is poorly organized. We do it prior to getting a PSA and again after a diagnosis but maybe both times are not ideal. Maybe men should be educated when they have a situation where there is a real possibility of cancer but it has not been diagnosed yet. At this time it is not an abstract concept for men but rather a real possibility, they are more likely to listen, and for the doctors who know that many men who are biopsied do not have a positive biopsy, they may be less likely to give subtle panic cues to the men they are talking to. This fits with what I have read in the AUA guidelines but has not seemed to be part of the early detection discussion that we have been having as a society.

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