Sticks and stones can break your bones, and words can really hurt you

Smart physicians have always been extremely conscious that how they present information can have a profound impact on exactly how patients will react to that information. And how clinicians talk to patients about active surveillance as an initial option for management of lower-risk forms of prostate cancer is well known to affect patients’ perceptions.

To provide an example, the patient who is told bluntly:

You have prostate cancer. It is relatively low risk and we can either treat it now or we can just watch it for a while using a process called active surveillance to see if it’s going to progress.

is likely to have a very different initial response compared to the patient who is told:

Your biopsy shows a type of low-risk prostate cancer that is highly unlikely to metastasize, let alone lead to your death, in the next 10 to 15 years. If fact, it may never become a clinically serious problem at all.  So it’s important for you to understand that you have plenty of time to consider all your options and make a really good decision about what needs to be done in a case like this, because all treatments come with risks for significant side effects. What I would suggest we do is keep a careful eye on this together for a while before we make any decisions about treatments like surgery or radiation therapy. This gives you time to look at all the options with care, and I can give you some resources to help you study these.

A study by Volk et al. in the Journal of Health Communication has recently validated this general concept.

The authors recruited 331 men with a diagnosis of localized prostate cancer who used a web-based survey to rate messages about active surveillance for believability, accuracy, and importance when being told about their cancer and starting to think about making decisions about management options.

Apparently messages like

You don’t have to panic … you have time to think about your options

were rated as believable, accurate, and important by more than 80 percent of the survivors. By contrast, messages about having trust in an active surveillance protocol and “knowing in plenty of time” if treatment is needed were rated as accurate by only about 36 percent of respondents.

Most men know next to nothing about the potential management options for low-risk prostate cancer when they are initially diagnosed — and they have no good reason to think that not treating it immediately may be a very good idea. It takes a little while to understand that, and for a newly diagnosed patient to gain confidence that active surveillance can be followed effectively by curative treatment if the cancer shows signs of progression and treatment becomes necessary.

Nearly 2 years ago now, another research team had shown that what they described as a “decision counseling program” could be used to help men with low-risk prostate cancer recognize that active surveillance might be a very reasonable initial management option. This decision counseling program involved a series of steps, as follows:

  1.  The patients are given a printed summary of answers to frequently asked questions by treatment type. Examples of such questions include “What treatment option is best for long term survival?” and “What are the side effects of treatment X.”
  2. Working with a qualified nurse, the patient is then asked to identify the top three reasons that he may or may not be willing to initiate active surveillance (pros and cons), and to rank those reasons by importance.
  3. The nurse enters the reasons and rankings into an online program which then generates a brief summary report designed to help patients visualize their preference to active surveillance versus aggressive treatment. A copy of this report is provided to the patient himself and to the clinical team.
  4. This report is used as a point of discussion during the patient’s clinical visit with a urologist and radiologist at which actual decisions about management are made.

In initial testing, the researchers found that, after going through this decision counseling program and speaking with the clinical team:

  • 19/23 patients (83 percent) elected initial management on active surveillance as opposed to immediate invasive therapy.
  • The patients reported feeling “more knowledgeable, … more informed, more supported and less conflicted in their decision.”
  • The patients also “understood their options better, and felt like they were making a treatment decision that was right for them.”

Choosing to just monitor prostate cancer when you are newly diagnosed is hard, and requires a lot of confidence — in one’s clinical team as well as in one’s own decision making abilities. The newly diagnosed patient needs a good deal of help to gain such confidence. And sometimes, not only may “sticks and stones break your bones” but, in addition, “words [can really] hurt you”.

One Response

  1. Great post!! I had to learn that second paragraph myself. The past 3 years of normal life have been priceless.

    Further, in my experience, AS patients need to win the “mental battle”. If they can’t, AS may not be for them.

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