Are US urologists really acceptant of active surveillance?

According to a new study published on line in Prostate Cancer and Prostatic Diseases, 370/425 urologists who responded to a recent survey felt that active surveillance was a reasonable management strategy and about 350/425 actually manage patients by using this approach. But only 1 in 12 urologists actually responded to this survey.

Gorin et al. sent out their survey by e-mail to 4,987 urologists. Their intent was to evaluate the urologists’ knowledge, acceptance and practice of active surveillance for low-risk prostate cancer.

The base results of the survey were as follows:

  • Only 425/4,987 urologists (8.5 percent) completed and returned the survey.
  • 387/425 of these urologists (91 percent) were familiar with active surveillance and aware that it differed from watchful waiting as a management strategy.
  • 370/425 (87 percent) of the respondents felt that active surveillance was a reasonable management strategy.
  • Among these 370 urologists, 95 percent actually use active surveillance to manage carefully selected patients.
  • Most survey participants (74 percent) felt that only patients with a Gleason score of ≤ 6 were appropriate candidates for active surveillance.
  • A small subset of participants (6 percent) felt that active surveillance might be appropriate for men with PSA levels > 10 ng/ml.
  • There was no consensus regarding the timing of appropriate follow-up biopsies.
  • Among the 55 respondents (13 percent) who did not consider active surveillance to be a reasonable management option
    • 42/55 (76 percent) were concerned about missing an opportunity for curative treatment.
    • 36/55 (65 percent) were concerned about the risk of tumor under-grading

What worries The “New” Prostate Cancer InfoLink about this study is not the results. It is the relatively small percentage of urologists that opted to participate in this study.

The place of active surveillance in the management of prostate cancer is going to be critical to the future effective and safe management of this disorder. The American Urological Association needs to know whether its members are actually willing to come on board with what is becoming a key strategic management option for the care of men with low-risk prostate cancer.

Are there still a lot of answers needed about the actual implementation of active surveillance? Sure there are. But if patients can’t be sure that active surveillance is going to be presented to them as a reasonable option under appropriate circumstance, then the widely recognized over-treatment of low-risk prostate cancer will continue — most particularly among the elderly — for another decade or more.

19 Responses

  1. Urologist are well informed of the risk from surgery (robotic and “open”) and benefits which I would agree support active surveillance.

    They are not aware of the lower risk and improved cure rates from advancements in radiotherapy. Improved imaging allows improved dose planning, real time target tracking, and beam delivery from three axis allows sub-millimeter accuracy of prescribed dose volume to target volume, which results in lower dosing to surrounding structures. Net patient outcome: high cure rate, no risk from surgery, lowest risk of side effects (Alan Katz MD, Five Year Study), 4 or 5 sessions of external beam therapy and no recovery.

    I was treated in 2008 and today, based on the eveidence, would choose AS over surgery; however, I would still select the Cyberknife over AS.

    The best path is the one based on knowledge, there is no one best treatment option for everyone.

  2. Active surveillance will be more readily accepted when low-risk lesions are termed “neoplasms” rather than “cancer.”

    Words frame how we understand the world. We use words to compose the narratives that give us meaning and purpose. We use them to navigate our experience. The words we use greatly influence the decisions we make.

    Over-treatment will continue as long as clinicians and pathologists indiscriminately use the emotionally laden “C” word for low-risk neoplasms.

    I’ll shut-up now for a bit!

  3. The urologists responding to the survey are self-selected and any conclusions that are drawn from the responses are suspect.

  4. There is no question that without a high consensus among urologists the acceptance of active surveillance is still far from being the proper initial consideration for those with low-grade prostate cancer at diagnosis.

    The recent NIH conference on active surveillance was the first step in this direction if we ever are going to properly control what happens to men when diagnosed with prostate cancer. The consensus statement from this conference contained the following:

    “However, there are many unanswered questions about active surveillance strategies and prostate cancer that require further research and clarification. These include:

    “1. Improvements in the accuracy and consistency of pathologic diagnosis of prostate cancer

    “2. Consensus on the most appropriate candidates for active surveillance

    “3. The optimal protocol for active surveillance and the potential for individualizing the approach based on clinical and patient factors

    “4. Optimal ways to communicate the option of active surveillance to patients

    “5. Methods to assist patient decisionmaking

    “6. Reasons for acceptance or rejection of active surveillance as a treatment strategy

    “7. Short- and long-term outcomes of active surveillance.

    “Well-designed studies to address these questions and others raised in this statement represent an important health research priority. Qualitative, observational, and interventional research designs are needed. Due to the paucity of evidence about this important public health problem, all patients being considered for active surveillance should be offered participation in multicenter research studies that incorporate community settings and partners.”

    Given all these comments, how can we expect fast adherence to active surveillance protocols at the current time? The optimal active surveillance protocol needs to be identified and shown to be an acceptable method to avoid treatment without the risk of occult progression; more research is needed to develop the proper markers for disease aggressiveness; uninformed physicians will need training.

    All this will take time and resources. I see the current recommendation of the USPSTF as a step backward in identifying low-risk disease because presently they do not know with certainty which will progress and which will not if diagnosed at a younger age. Still, all of those who claim to being patient advocates must communicate the availability active surveillance as a management option and the potential to safely avoid immediate treatment even with the limited knowledge we currently have. In time active surveillance will be an acceptable option.

  5. The problem is we really can’t, definitively, diagnose “low-risk” yet.

  6. Dear Mark:

    If we could ever “definitively” identify truly low-risk disease, then we wouldn’t need active surveillance, because truly low-risk patients don’t need to be treated.

    The whole point of active surveillance is that it is a method to deal with the fact that we can’t yet differentiate between the truly low risk and those who just look as though they are low risk.

  7. Mike,

    I don’t think that the statement “truly low-risk disease doesn’t need to be treated” is appropriate in younger patients. How do you know that in time, say 20 to 25 years, these cancers will not dedifferentiate? From the Scandinavian studies cited previously they know that untreated and/or palliated prostate cancer has a high mortality. For that to happen, there has to be dedifferentiation with time.

  8. Ralph:

    I am not saying that men with truly low-risk prostate cancer don’t need to have an eye kept on it. I am saying it does not need to be treated immediately and it does not need full-blown active surveillance either. The Scandinavian studies (as you keep pointing out) were all carried out before the days of the PSA test. We have no idea whether men who met or did not meet criteria for a diagnosis of prostate cancer in those studies had truly low-risk disease. Indeed, it seems highly likely that most of them never did. Truly low-risk disease is (arguably) a post-1995 phenomenon.

  9. Mike,

    What has the fact that the Scandinavian studies (that I keep pointing out) happened before the PSA era [got to do with this]? Did progression happen then and it doesn’t happen now? That history is important in the absence of a marker because prostate cancer can progress without symptoms?

    Are you saying that those men were born with advanced disease? There is no question that at one point in their lives they did not have prostate cancer and that the cancer went through stages of dedifferentiation until it was detected. Why should that be ignored? What has PSA to do with that biological fact?

    Do you remember the time when here most men were diagnosed with advanced prostate cancer? PSA changed that because it promoted early detection, but without it or for those that do not get tested, they have a higher risk of being diagnosed with more advanced disease. Why ignore history, here and in Scandinavia?

  10. Ralph:

    I am not ignoring history at all. You are comparing apples and oranges.

    What I am saying is that the men who are being diagnosed today in America with low-risk disease were never being diagnosed at all in the long-term Scandinavian studies (that includes many but not all of the younger ones). There is no evidence to suggest that they progressed to a symptomatic state leading to a diagnosis in Scandinavia. Thus, it is likely that their disease never became clinically significant. They are the 30% (or higher) of men who are regularly over-treated.

  11. Ralph:

    I am not ignoring history at all. You are comparing apples and oranges.

    What I am saying is that the men who are being diagnosed today in America with low-risk disease were never being diagnosed at all in the long-term Scandinavian studies (that includes many but not all of the younger ones). There is no evidence to suggest that they progressed to a symptomatic state leading to a diagnosis in Scandinavia. Thus, it is likely that their disease never became clinically significant. They are the 30% (or higher) of men who are regularly over-treated.

  12. So, “truly low-risk disease” is a created market with an up- and a downside. The upside is that calling “truly low-risk disease” a cancer for 15 years and subjecting men with “truly low-risk disease” to the same treatment modalities and cultural narrative about what it means to have “cancer” has created the economies of scale to evolve treatments to the point of being able to authentically help many, many men with high-risk disease,”true prostate cancer”. The downside is hundreds of thousands, if not millions, of men with “truly low-risk disease” have been unnecessarily subjected to the risks of surgery, risks of radiation, and maiming side effects of current treatment modalities.

    I see a lot of comments in the public discourse about prostate cancer controversies that compare breast cancer to prostate cancer. If we must make a gender comparison, I have come to think the better analogy is between over-treatment of prostate cancer and the fantastically gross (in every sense of the word) over-use of Cesarean section deliveries in the US. In both cases the vast majority of the patients (you know, humans) are convinced by medical personnel that they or someone they love are at immediate risk of dying, even though there’s compelling evidence regularly covered by popular media documenting over-treatment at the population level.

    In both cases, over-treatment is driven by fear of liability, subsequently allowing the rationalization of over-treatment as “defensive” medicine. In both cases the physical damage created by treatment, rather than the condition, are subjected to a cultural narrative that is both puritanical (in the case of prostate cancer, “If couples really loved each other, they wouldn’t care whether or not they could have a sexual component to their relationship;” in the case of Cesarean section, “Newborns don’t need close physical contact, nursing, and intimacy with their purposely drugged and wounded mother, we can just stick’em under a heat lamp”) and the commodification of inherently normal human capacities (sex, birth, control of elimination), the loss of which are not just physically, but emotionally debilitating and impoverishing.

    I’m glad that a lot of men with “true prostate cancer” have been cured or able to manage their disease for a decade or more with much of their lives intact. However, it’s very, very upsetting to think of all the loss to all the men, and the people who love them, that never needed to happen in the first place. We don’t just need a better diagnostic test to distinguish “truly low-risk disease” from “true prostate cancer,” we need a new business model to emerge that makes it wildly explicit that active surveillance is profitable in both the positive and negative sense — income can be generated by practicing active surveillance and loss of income can be avoided through insurance and tort reform that allows clinicians to practice humanely and ethically — First do know harm.

  13. Oh, and I should have included in my comparisons between the two controversial areas of over-treatment, both radical treatments of the prostate and Cesareans create a spiral of medical intervention for those subjected to them that they are then dependent upon for the rest of their lives. Many obstetricians insist that all subsequent births be medicalized via Cesarean section surgery, and most men subject to radical prostate cancer treatments require medication and the use of medical devices for sexual activity. So, one party’s downside (a lifetime of medical intervention for both disease follow-up and to attempt to ameliorate some of the damage of treatment) can be another party’s upside (a customer for life).

  14. Mike,

    I am comparing oranges with oranges. Those men here and in Scandinavia who were diagnosed before the PSA era at one point were men with well differentiated cancers. What else could have happened? We still get men here diagnosed with advanced disease. Were they born with it? Presently we have the example on how progression happens after treatment. Why would be occult progression before treatment be any different?

    You are saying that men with low-risk disease very seldom progress in this day and age and I say that age is a factor that cannot be ignored because if given enough time as it happened historically with untreated prostate cancer, some can progress and eventually need treatment. Age is a significant risk factor you cannot ignore in low-risk disease.

  15. So, use active surveillance to identify if/when young men need treatment. Some will win the lottery and never require treatment. Some will have extraordinarily good fortune and be able to delay treatment until treatment improves to the point where they don’t have to be maimed in order to have their cancer treated. Some will need it sooner than later and, hopefully, try to find a way to get along with all the consequences of treatment. Why in the world would anyone argue against giving young men a shot at avoiding very real and potentially irreversible damage to their bodies that they don’t actually need? Why?

  16. Tracy,

    Who is arguing? I am just correcting Mike’s statement that low-risk prostate cancer does not require treatment. Age at diagnosis is key and historically there is evidence that given time it does.

    I think that active surveillance is the best way to avoid treatment and maintain a man’s quality of life, if diagnosed with low-risk disease. I am also saying that men need to have a solid active surveillance protocol supported by enough physicians that know what they are doing instead of being on their own.

    We are not there yet. The consensus of the active surveillance conference says so. We as advocates need to make it happen as soon as possible to avoid treatment in those that do not need it and to ensure that those that do get it at the proper time.

  17. Ralph:

    What I said above (in response to the comment by Richard) was that ‘If we could ever “definitively” identify truly low-risk disease, then we wouldn’t need active surveillance, because truly low-risk patients don’t need to be treated.’

    By truly low-risk disease I intended to imply truly indolent disease, which is highly unlikely ever to need treatment.

    You are talking about “all” low-risk disease as assessable today.

    These really are apples and oranges.

  18. Mike,
    And how do you identify truly indolent disease in a 50 year old man? How do you know that it will never need treatment? All I am saying that prostate cancer has very high mortality when diagnosed in young men and goes untreated. That is based on historical data and not in apples and oranges.

  19. Ralph … We can’t do that yet. That was where this whole discussion began!

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