On active and proactive surveillance

Once upon a time (and not so long ago) newly diagnosed men with some types of prostate cancer used to think your sitemaster was out of his tiny mind when he would suggest to them that they might be wise to just monitor their situation rather than rush into treatment. Patients who had had treatment for their low-risk prostate cancer and considered themselves to be “cured” were often even less polite about your sitemaster’s perspective (despite the side effects of their treatment that many of them were distinctly unhappy about).

The prostate cancer research community first started to look seriously at the clinical effects of what has become known as “active surveillance” about 25 years ago, through the work of people like Dr. Lawrence Klotz in Toronto, Canada, and a few others — but some physicians were already managing selected patients in this way, and Dr. Gerald Chodak had been arguing that just monitoring selected patients was perfectly reasonable as long ago as the late 1980s — well before we had all the tools we needed to be able to do this as effectively as we can today.

Over the past 10 years, active surveillance moved from being a form of management that most urologists rejected as unwise to one that is now considered to be one of the most appropriate forms of first-line management for a very large proportion of men with low-risk prostate cancer and at least some men with more favorable forms of intermediate-risk prostate cancer.

As your sitemaster always emphasizes when making such statements, it is important to recognize that active surveillance is a process designed to defer the need for invasive treatment unless and until it becomes apparent that treatment is advisable or necessary.  It is not, in and of itself, a form of treatment.

However, earlier this year, a small group of patients came up with a new term for the potential management of men with forms of prostate cancer that can initially just be monitored. That term is “proactive surveillance“. As described by Howard Wolinsky (see his article here), proactive surveillance really is a form of treatment. Why? Because it involves taking active steps to minimize the risk that a monitorable form of prostate cancer will progress.

Now we should be clear that the actual process of proactive surveillance has yet to be well defined and validated, but some of the things that would certainly seem to be likely components of such a process are:

  • Regular exercise
  • A healthy diet
  • Maybe certain types of dietary supplement
  • Maybe even certain types of pharmaceuticals like cholesterol-lowering agents

The point is that instead of just working with one’s doctors to monitor one’s risk for progression, a patient who is on active surveillance can and should also be able to take very specific actions that can lower his risk for such progression — and we need to do research to define what those steps are and to validate the consequent outcomes.

The first time that — as far as your sitemaster is aware — this concept is going to be formally discussed from a scientific perspective will be at a meeting at Reykjavik, Iceland, in October 2019.

This meeting is being coordinated not by physicians but by a group of patients called Active Surveillance Patients International. To sign up to get more information, just click here. All of the leading members of this group are already active participants in Prostate Cancer International’s active surveillance virtual support group and other prostate cancer patient groups around the US and elsewhere (Iceland specifically included).

What your sitemaster is going to be doing is seeing if he can make sure that a small group of recognized prostate cancer researchers decides to come to this meeting to see if we can start to define the process of formalizing research priorities in the field of proactive surveillance. This looks, to your sitemaster, like the next big priority in the effective, long-term management of low- and intermediate-risk forms of prostate cancer.

17 Responses

  1. I believe my experience may be relevant to this discussion.

    One year ago I was diagnosed with low-risk (Gleason 6) cancer after a biopsy with 22 core samples. Our initial course was active surveillance, but we also did a Prolaris test and MRI. The genetic test showed a more aggressive cancer, and the MRI a lesion not found on the biopsy, plus the original biopsy lesion to be fairly large. With those outcomes, I proceeded with brachytherapy. I am now 6 months out, and have recovered all functions to a 95 to 100% level. I am 71 today. I have a number of friends who have had surgery, and in every case the pathology shows a level of disease greater than was presumed. It is my perception prostate cancer is somewhat iceberg like in that it is always more significant than what you see. I think the concept of proactive surveillance makes sense if that means doing ongoing diagnostic testing and monitoring, but, as has been told me, you have the ability to arrest this disease for only so long. If that opportunity slips away, then you are in for a far rougher time than the annoyance of side effects.

  2. I’ve never liked the “surveillance” part of the name. Sounds so passive and ineffectual. Like watching a car crash or watching your life pass away as you drift helplessly with the flow. You can only watch, not change, it is so defeating emotionally.

    If any term needs fixing it is “surveillance”. I suggest “management”, it implies control, taking control of your life and your current position. Yes, you can manage your life after diagnosis. Time to give patients that message.

  3. Cool: Thank you as always Sitemaster. I am probably childish and/or cowardly but I was let’s say talking to someone the other day and got a data point as to why this is my choice.

    Mild chemotherapy is another term I use for it (atorvastatin and metformin). I seem to be progressing only quite slowly and I buy off the doctors by telling them what I believe; they are getting better faster than I am getting worse.

    It’s good to see all this becoming more acceptable and recognized. I wonder if they can get Klotz.

  4. Dear SUM: I understand Klotz has already agreed to speak at this meeting.

  5. The following are excerpts of remarks made by Stephen B. Strum some years ago, and please note that “he” coined the term “Proactive” in his use of terms “Pro-active Integrative Care” and “Pro-active Integrative Management” when discussing the out-of-date “Watch and Wait” or “Active Survillance.”

    “Watch & wait is a stupid concept since we have a finding (a diagnosis of a malignant disease) that should be signaling us that the system has a defect in it. It is a red flag that should tell us that attention needs to be given to avoid a greater injury. Therefore, the term watchful waiting (WW) or even the term I coined to supersede WW, AOS (Active Objectified Surveillance) should be abandoned, in my opinion. The term I would like to see used is Pro-Active Integrative Care (PIC). Maybe this should even be altered to PIM — Pro-active Integrative Management. What does this mean? The condition we think of as health depends on the health of interconnected units, similar to the circuitry of an electronic device with a host of connectors, transistors, resistors, capacitors, and the like. It is a Swiss watch with interconnecting gears, both small and large, but requiring the integrity of all to have the watch healthy and deliver accurate time. In the setting of a new diagnosis of PC, I routinely assess as many of these different “gears” or functions to make sure that none are out of balance. Almost invariably there are some findings that need fixing.”

  6. Thanks, Sitemaster. Appreciate the kind words.

    All active surveillance patients with prostate cancer and spouses welcome to join us in Iceland in October 2019. Maybe you want to join in the planning? We are looking for all types of help on our planning team and board. Lawyers, bankers, accountants, cowboys, bakers, former hippies can find a place with what is being described — by others — as an emerging international movement to work on behalf of AS patients. We have an all-star cast of speakers. We haven’t disclosed names yet. We’re still planning. Please contact us through our website ASPIconference.org

    Howard Wolinsky

  7. Dear Roger:

    What you do not seem to appreciate is that at the other end of the active surveillance spectrum there are numerous men who are diagnosed with Gleason 6 disease (and very much more rarely with Gleason 3 + 4 = 7 disease), who have the same sorts of tests as you had, and in whom repeat MRIs and repeat biopsies can never find cancer again, so they never need treatment again. And then there is a whole spectrum of other patients in between. However, they all need to be carefully monitored over time.

    Your experience is relevant but your statement that “you only have the ability to arrest this disease for so long” does not apply to everyone, although it may well have applied to you.

  8. I didn’t think I suggested my experience applied to everyone, but rather was relevant. Obviously people who have negative follow up tests are not in the same boat, so I take your point. As far as only having so long to address the disease, that is taken from Patrick Walsh. Perhaps that view has changed.

  9. Dear Roger:

    It is my understanding that Dr. Walsh’s views have evolved significantly over the past 5 years or so since data started to come out from the long-term active surveillance program at Johns Hopkins. The last (third) edition of his book was published in 2012 and so was being written in 2010 and 2011 — i.e., a long time ago.

  10. @Roger,

    Sorry to pile on but each of us is in a statistically-insignificant sample set of 1. (YMMV, in acronym-speak.) The whole point of doing AS (call it that for now) is to be sure that those risks have been eliminated.

    I have a great friend with African genes and an intense family history who is on AS on the basis of a 12-core transrectal biopsy (that damn near killed him, BTW). I am scared to death for him. The standard of care is moving on. Some of us will still lose, and we should light candles to all of those. But done properly, the sawbones do not have the body count to stop us and to their credit most of them are increasingly coming to see that.

    You were lucky in your own way: well done. One surgeon proudly showed me his stats. I of course smiled and “oohed”, but the words in my mind were “Hacksaw Ridge”.

  11. Shaws — Not sure I follow your reference to Hacksaw Ridge. Are you suggesting that one is just lucky or not? Whatever the case, my larger point is that I have seen this disease get away from people, and the AS approach has that as it’s downside. Since it is no longer relevant to me, perhaps my view is gratuitous; though that is not my intent. Every person has to weigh the many variables and possible downsides, but the argument that you will likely die of something else just didn’t resonate for me. I wish everyone dealing with this good luck, good doctors and good, informed decision making.

  12. Even with the suggested proactive approaches it’s still basic active surveillance and doing these things are not considered an active therapeutic replacement for prostate cancer treatment. I appreciate the emphasis on diet, exercise, supplementation and other means of “treatment’. But simply put, if you need dietary changes to have a healthier diet, or exercise to be better fit, or supplementing because you are deficient somewhere? Then you should try to be your healthiest. Same with a statin, if your cholesterol is high and if you can’t fix it with diet and/or exercise then you may need the statin. But you are still addressing other health issues as needed. I like to look at these items as “integrative oncology” that enhance a standard of care such as active surveillance or any other form of standard of care including active therapies. The suggested “proactive” approaches are recommendations you should receive to improve outcomes and QoL at all levels of prostate cancer care.

    I would like to know more about this summit as soon as possible. I would like to apply for a grant to be there and attend. I am certain I can get it as long as I get it soon enough to get the grant. I am fortunate to receive this type of continuing education funding.

  13. “Even with the suggested proactive approaches it’s still basic active surveillance and doing these things are not considered an active therapeutic replacement for prostate cancer treatment.”

    The problem is there is nothing “therapeutic” about unnecessary surgery or earlier than necessary surgery. The emotional “therapy”
    of doing something, anything, is suductive in patients, doctors and guides.

  14. The core question that needs to be answered is, “Are there things that a man on active surveillance can do that would truly lower his risk for progression of relatively benign disease?” We don’t actually know whether any of the things I mentioned might do that — even though they might be good for his health for other reasons.

    So, imagine a healthy, fit, 55-year-old male who already exercises regularly, eats well and not excessively, has a BMI of 24.5, has normal health cholesterol levels, and gets diagnosed with low-risk or a very small amount of favorable, intermediate-risk prostate cancer. Are there other things he could be doing that would help him to avoid the need for active treatment for prostate cancer? Or even double the time it took until he needed prostate cancer treatment?

  15. I like the new concept.

    Proscar®/finasteride and Avodart®/dutasteride for Active Surveillance Patients?

    It’s a little surprising that Proscar®/finasteride and Avodart®/dutasteride have not been mentioned. There is evidence that these drugs help counter or eliminate prostate cancer that is characterized by a Gleason score of 6 or lower (and evidence that they appear ineffective, on their own, against Gleason 7 and especially higher Gleason cancer). There is also some evidence suggesting there may not be much of an effect. Dr. Klotz is among those who have considered these drugs for active surveillance patients. Does anyone know if Dr. Klotz is still interested in these drugs for active surveillance patients?

  16. Quite right, @Sitemaster. As you highlighted in the “Let’s prove the obvious all over again” post, most of what prostate cancer sufferers at any stage “should” be doing, everyone should be doing anyway, prostate cancer sufferers at another stage or not.

    One thing that I am doing that I would otherwise not do is take a statin and metformin in a hope that I will “lower [my] risk for progression of relatively benign disease”. The science is not yet probative, but strongly suggestive. And it may turn out to work for others but not for me. We’ll see.

  17. Jim:

    I am not aware of any well-structured, long-term trials of drugs of this class in the management of low-risk prostate cancer … and we know that some patients would not want to deal with the side effects.

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