AS in practice in a specific US community setting

In a presentation at the ASCO annual meeting, Dr. Ronald Chen reported that just 32 percent of newly diagnosed men who were initially managed on active surveillance (AS) in North Carolina between 2011 and 2013 were actually managed in compliance with guideline recommended monitoring.

Guideline-adherent monitoring on AS during the study period, as recommended by the NCCN, required PSA testing every 3 to 6 months and a repeat prostate biopsy within 18 months of initial diagnosis.

Now it has to be said that these are therefore at least 4-year-old data, and your sitemaster profoundly hopes that there has been some significant improvement over the past 4 years. However, it is critically important that men who elect to start their care for low-risk of favorable intermediate-risk prostate cancer on active surveillance are being monitored on true active surveillance and not just on a slightly modified form of watchful waiting. This requires major behavioral change within the urology community; significant appreciation of the distinctions between active surveillance and watchful waiting within the primary care community; and real understanding by patients of the importance of regular check-ups and related tests in order to ensure that AS continues to be the best option for them.

And that’s before we even start to address the issue of whether we can implement “proactive” surveillance — i.e., whether there are specific things that men on AS for prostate cancer can be doing to appropriately extend the time that they can and should remain on AS as opposed to feeling the need to have some form of invasive treatment.

The abstract of the paper by Peterson et al., presented at ASCO by Dr. Chen, was also discussed in a recent commentary in Renal & Urology News. Bascially, the paper showed the following:

  • The authors collaborated with the North Carolina state cancer registry.
  • They identified 346 men with newly-diagnosed low- or intermediate-risk prostate cancer throughout North Carolina who initially pursued active surveillance between 2011 and 2013.
  • Over the firsat 2 years of follow-up after starting on AS
    • 58 percent of patients received adequate PSA testing.
    • 45 percent of patients were given a repeat prostate biopsy.
    • Just 32 percent of patients received guideline-adherent monitoring overall.
  • Urology follow-up was
    • 97 percent in Year 1
    • Just 67 percent in Year 2.
  • Multivariable analysis showed prostate cancer anxiety scores and younger age were significantly associated with conversion from AS to invasive treatment
  • At 2 years, 94 percent of patients expressed no regret regarding their decision.

Peterson et al. concluded that:

In a non-controlled setting of patients pursuing AS in the community, adherence to guideline-recommended monitoring was only 32 percent. Few patients expressed decisional regret. Conversion to treatment was likely driven by patient anxiety but not disease-related factors. While there are continued efforts to increase AS uptake, these results highlight the importance of behavioral interventions during active surveillance to reduce anxiety and improve monitoring adherence. Whether AS in non-controlled settings is safe and effective requires further study.

The “New” Prostate Cancer InfoLink would emphasize that if “AS in non-controlled settings” (such as in clinical trials or at motivated academic medical centers) were to be shown not to be “safe and effective” at this time, this would reflect very poorly on the medical community, because it would clearly demonstrate that they have not put it place systems to ensure close and careful follow-up of patients diagnosed with cancer. We all know that patients (and particularly male patients) can be non-compliant with healthcare recommendations, but there is an obligation on the medical community to ensure that they reach out to patients who are at risk for serious disease progression if they are not coming in for regular, scheduled appointments.


9 Responses

  1. “Conversion to treatment was likely driven by patient anxiety but not disease-related factors.”

    So a real question is what is driving patient anxiety? Not minimizing the need for valid ongoing medical status, but does adherence to the guidelines have a positive or negative impact on anxiety? If my doctor keeps having me tested are they really not telling me how worried they are?

    At such a low adherence rate in the field, are the outcomes resulting from the guidelines being field tested ?

  2. Dear Michael:

    There are multiple forms of patient anxiety, and they can be driven by a host of different factors. You are confusing two different things here.

    The first is whether the correct information is being collected (based on guidelines) over time that will allow everyone to make the best possible decisions.

    The second is what happens to the patient on a day to day basis, because different types of anxiety can arise for so many different reasons. One of them (just as an example) is when your wife, partner, daughter, or whoever, keeps saying things like, “I think active surveillance is a really bad idea; you should just have it out. It’s cancer for heaven’s sake”. A very different type of anxiety occurs when your PSA goes up a little (say from 3.98 to 4.02 ng/ml). Yes, your PSA has risen, but a rise of that size is not necessarily clinically significant. Your next PSA level could come back at 3.94 ng/ml. The problem is that you can’t get an appointment to see your doctor for 3 weeks, and so by the time you have been worrying about this for 3 weeks, you have come to the conclusion that you will just get treated (even though this is not necessarily a good idea).

    Management of patients on AS is largely about patient “care”. This is a completely different form of process than the one most urologists have been trained to conduct over the past 40 years (radical prostatectomies). It is also why many urologists over-test many of their patients on AS. They want to “do something” as opposed to working out how to “care” for the patient.

    There is a very clear recognition that there is a re-learning process going on in urology today when it comes to the management of low- and favorable intermediate-risk prostate cancer. There is also a serious need for coordinated research across this entire area. It is going to take some time. And the wise patient will realize that there are things that he can do to help himself that will help to educate his doctor as well.

  3. My personal observations over the past 10 years is that one factor influencing the non-compliance in AS protocols is men’s fear of biopsies. This has been especially notable in the AS support group discussions in the annual PCRI conferences in L.A., where “horror stories” of infections from biopsies are presented and some men on AS insist they will never get another biopsy. And I still hear “social media” myths of biopsies spreading cancer. It seems ironic that “biopsy anxiety” can sometimes seem to be stronger than “cancer anxiety”.

    Obtaining tissue samples for pathological examination are an important part of all the recommended AS protocols. We are not yet at the point where biochemical markers can replace the information from a biopsy sample for accurate staging and AS monitoring. This is especially true in the “community urology” setting most of us have to deal with.

    Expert imaging by mpMRI or color Doppler can better target biopsies and reduce the number of cores, and pre-biopsy bacterial tests can better select antibiotics used in the biopsies to further reduce the low probability of biopsy infections. But so far repeat biopsies are a necessary part of effective AS protocols. While on AS I much preferred dealing with any negative aspects of a needle biopsy rather than abandoning AS for surgery ….

  4. Would it be better for such an AS patient to be followed primarily, though not exclusively, by his primary physician?

  5. A Sad Example from Our Us Too Chapter

    Thanks for posting this report.

    We had an occasional attendee at our support group who came a considerable distance to join us. He had chosen active surveillance, and he was intelligent and seemed savvy about the disease. He did well for a long time, and we would see him every few years. He also attended other groups. I did not know him well, but I liked him and always enjoyed talking to him.

    However, the last time we saw him, he told us that his cancer had become aggressive and advanced, and he admitted that he had grown casual about surveillance and had neglected PSA testing and other monitoring in recent years. Unlike the men in the study, he had been diligent with monitoring in the early years, but his success with active surveillance perhaps induced him to lower his guard. Within a year or so later his wife called and informed us that he had died due to prostate cancer. His loss is sad, and the reason for his loss — his own neglect of surveillance — makes his passing even more regrettable.

    The study discussed above is a wake-up call to a problem I suspect many of us, including me, did not know existed. I’m not sure what we in the support and education group community can do other than to emphasize that surveillance means active surveillance!

  6. Dear Tarhoosier:

    No, almost certainly not. It is the urologist who is going to manage the patient’s prostate cancer. However, if I was a patient like this I would be doing two things:

    1. Making very sure that the urologist who I was working with really understood the currently available guidance for the management of men on AS, and ask him to keep my primary care physician informed about any significant changes.
    2. Making quite sure that I met at least annually with my primary care doc to make sure her was fully “up to speed” with the available information about my prostate cancer and that he felt able to talk with my urologist if he had any concerns.

  7. Jim:

    There are three things that I emphasize constantly for people (whether they are part of support groups or no):

    — Active surveillance is a proactive form of care suitable for carefully selected men who have a significant life expectancy and potentially curable disease. And yes, regular monitoring is absolutely essential.
    — Watchful waiting is a passive form of care appropriate for men with an abbreviated life expectancy and a relatively slowly growing form of cancer who are either unlikely to die of their cancer (because of their age and limited life expectancy or because of comorbid conditions).
    — Watchful waiting can be practiced on men diagnosed with any stage of prostate cancer. Active surveillance should only be practiced on men with low-risk or favorable, intermediate-risk prostate cancer who wish to try to defer or delay the need for immediate curative therapy and who understand that such curative can still be administered later if it becomes necessary.

  8. Thanks Sitemaster for your pithy comment. I’m going to print it and add it, crediting you, to one of our Us Too posters on active surveillance.

  9. There seem to be two unfortunate extremes in how men deal with active surveillance (AS).

    First, too many let their anxiety at being diagnosed with the “Big C” cause them to abandon AS and seek treatment when it is not needed.

    Second are those who become lured into not maintaining actual “active” monitoring long term. I see the second category as similar to men in our support group that had prostate surgery and think they have been “cured” and do no follow-up PSAs, forgetting (or perhaps never told by their urologists) about the recurrence rates for prostate cancer treatments.

    Our disease is persistent. Fortunately, our options for fighting it (and living with it) continue to improve.

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