Why language is important in prostate cancer management

We have emphasized this before, but we want to talk about it again because it recently came up in a general primary care journal: “active surveillance” and “watchful waiting” are often used interchangeably — by patients and their partners and by some doctors too … but they aren’t the same thing at all.

In a recent article in the journal Family Practice, Mallapareddi et al. report findings from a series of focus groups in which they had discussed patient and patient partner perceptions of why and when men with low-risk prostate cancer (LPC) are willing to adopt active surveillance (AS).

A key finding from their study was that:

Multiple terms including “watchful waiting” were used interchangeably with AS. There appeared to be a lack of understanding that AS is not simply “doing nothing” but is actually a recognized management option for low-risk LPC.

Now the implications of this finding (albeit from a few small groups of patients and their partners) is that

  1. Patients and their clinicians may be using these different terms to encompass a range of actual forms of care, and
  2. Some clinicians may not really be practicing active surveillance at all when they imply that they are.

Watchful waiting and active surveillance are actually two very different techniques; they are appropriate care for different subsets of patients, and it is critically important that both patients and their physicians understand the differences.

Watchful waiting is a passive form of care. The goal truly is to “do nothing” unless it is really essential to do so in order to minimize risks and harms for the patient. What the doctor is responsible for doing with a patient who is on watchful waiting and is known to have or even just believed to have prostate cancer is simply to monitor the patient’s health and his PSA level and only “do something” if it becomes essential.

This means that three different subsets of patients may be good candidates for watchful waiting:

  • Group A: Relatively elderly men who have an elevated PSA level (whether or not they have had a biopsy), are suspected of having (or actually have) prostate cancer, but who have no symptoms of the disease and have a relatively short life expectancy of < 10 years for any one of several reasons (excluding their prostate cancer). Many such men may die long before they are ever likely to have any symptoms of prostate cancer at all.
  • Group B: Men (of any age) who are diagnosed with later-stage prostate cancer that is either metastatic or micrometastatic but who also have a relatively short life expectancy of < 10 years (again, for any one of several reasons other than their prostate cancer). In the case of these men, treating their prostate cancer may have no significant impact on their overall life expectancy. Consequently, the only thing we can do for such men is to optimize their overall quality of life by not starting androgen deprivation therapy (ADT) until it is needed to manage their symptoms for them (truly palliative care). Obviously one doesn’t want such men to suffer from bone pain or any of the other symptoms of late-stage prostate cancer, but if their life expectancy is already short for other reasons, then there is no point to the ADT until it is necessary to palliate symptoms of metastatic disease (if and when such symptoms ever occur).
  • Group C: Men like the late Terry Herbert, who founded the YANA or YANANOW web site, and who want to avoid all forms of invasive surgery, radiation therapy, etc., for treatment of their localized prostate cancer and are willing to take the risk that they will die of “something else” before they die of prostate cancer — even if that “something else” isn’t likely to happen for another 20+ years. Terry was diagnosed in 1996, when he was 54, and lived on a form of watchful waiting that he referred to as “non-invasive (active surveillance)” for the next 18 years, but he was on ADT for much of the last 7 years of his life. And he did die as a consequence of his prostate cancer, at 73 years of age. But he also succeeded extremely well in his original goal … of living for at least 10 years while avoiding all therapy for his prostate cancer for as long as possible.

Active surveillance is something else entirely. It is a way to actively manage low-risk, localized prostate cancer but to avoid invasive treatments like surgery and radiation therapy until such treatment is actually needed but still to be able to apply such invasive treatment with curative intent when it is actually necessary and still possible.

There are three different subsets of patients who we should think of as being potential candidates for active surveillance:

  • Group D: Men with a life expectancy of 10 to 15 or so years who are diagnosed with low-risk prostate cancer (Gleason score 3 + 3 = 6 or lower; PSA of 10 ng/ml or lower; clinical stage of T1c or T2a) who wish to avoid invasive therapy for as long as they can, and who may be able to avoid it altogether because they may never get metastatic prostate cancer at all anyway.
  • Group E: Men who have a life expectancy of > 15 years, who are diagnosed with low-risk prostate cancer, and accept that they are probably going to need invasive, curative treatment at some point in the future, but who, for whatever reason, want to optimize their quality of life for as long as they can do so before having such invasive treatment.
  • Group F: Men with a life expectancy of 10+ years who are diagnosed with a small amount of “favorable” intermediate-risk prostate cancer (Gleason score 3 + 4 = 7; PSA of 10 ng/ml or lower; clinical stage of T1c or T2a) and accept that they are almost certainly going to need invasive, curative treatment at some point in the future, but who, for whatever reason, want to optimize their quality of life for as long as they can do so before having such invasive treatment.

Such men should always be carefully and regularly monitored by the use of a battery of differing types of test (potentially including PSA tests, rectal exams, MRI scans, genetic/genomic tests, and biopsies when indicated by such other tests or symptoms). The goal of the doctor in this case is to be able to tell the patient if and when invasive treatment is necessary but can still be given with curative intent. This may be 2 years after the start of active surveillance or 20 years (or even never), and some men who start out on active surveillance may be able to transition over to watchful waiting if they live long enough without needing invasive treatment.

However, the distinctions between these two types of management are really important so that the patient and his partner fully understand the goals and objectives and so that the doctors are all “in sync” about what is expected of them too. We are aware that “active surveillance”, as currently practiced by some urologists, is really little more than “watchful waiting plus”, and that is unlikely to ensure that everyone is on the same page about exact expectations of the form of care that is being applied.

The other thing that is critical is that the patient’s primary care doctor also understands exactly how the patient’s prostate cancer is being managed. If the patient is telling him or her that he is on “active surveillance” but what the doctor is seeing in the patient’s charts is just a PSA test every 6 months, he or she need to be able to bring this to the patients’ attention to make sure everyone is on the same page — and the reverse is also true, i.e., the patients say he is on watchful waiting but the doctor is seeing regular PSA tests every 3 months, a multiparametric MRI every year, and maybe other tests and biopsies too. That’s obviously not just “watchful waiting.”

As the conclusion to their article, Mallapareddi et al. write that:

Emphasizing the low risk of a man’s LPC and enhancing physician trust may increase acceptability of AS. Standardizing terminology and presenting AS as a reasonable and recognized management option may also help increase its adoption.


5 Responses

  1. Interesting article and commentary, if only for the reactions it generated. This places a lot of faith in the life expectancy tables and seems misplaced in many respects.

    It seems to me that rather than trying to beat the odds someone else places on how much time we have left, that it might be better to follow the dictum that “tomorrow is not promised to any of us” and use our diagnosis of prostate cancer as an incentive to make the types of lifestyle changes we all know we should make even without the diagnosis.

    I don’t mean this in a feel good way of “Let’s make each day count” — rah,rah,rah. More like a wake-up call that has us checking out diet, exercise, and other stress reduction strategies that we can introduce with an eye towards measurable outcomes that can supplement PSA stabilization or reduction. For me, one is fitting back into my “skinny clothes” hanging in the closet.

    Just some random thoughts as I contemplate this year’s resolutions.

  2. “but who, for whatever reason, want to optimize their quality of life for as long as they can.”

    Yep, I can name a couple of Whatever Reasons! How about you?

  3. Dear pfadtag:

    The entire issue of what one wants to do to optimize one’s quality of life over time through lifestyle is a whole different but quite certainly related issue — for those among us who (a) understand and are willing to accept that any of that matters and (b) prepared to do something about it.

    With regard to your “life expectancy tables” comment … please note that I assiduously avoided any reference to how people could determine their personal life expectancy. I know people with multiple serious co-morbid conditions who are sure they are going to live for another 20+ years (unlikely, but possible) and I know physicians who will always flatly refuse to deal with patients’ reasonable questions about their life expectancies by answering all such questions by saying, “I can’t answer that for you. I’m not God.”

    However, I have a pretty clear idea of my reasonable life expectancy, and if they are honest I think many other people do too once they get to be about 65. Why? Because they’ve been having to think about what they are going to live on and how after they retire, and how long they have to plan for.

  4. Point well taken, Mike. Even more true when you are 70+ as moi.
    Perhaps I was being a bit defensive.

  5. Thank you, Mike, for the excellent — as always — summation.

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