Are we all talking about AS the same way? Not yet!

An interesting new article in The ASCO Post tells us almost as much about the physicians who treat prostate cancer as it does about the options that are available to patients.

Unfortunately, articles in The ASCO Post are not easily accessible for most patients. However, this particular article is entitled, “When can patients with Gleason 6 prostate cancer safely undergo active surveillance?” and it is based on a roundtable discussion between a writer for The ASCO Post and three specialists in the management of prostate cancer: Brian Chaplin, MD (a urologist at M. D. Anderson Cancer Center), Joathan Epstein, MD (the well-known uropathologist at Johns Hopkins), and Maha Hussain, MD (a medical oncologist who recently moved from the University of Michigan to the Robert H. Lurie Cancer Center in Chicago).

In general, this is an excellent article. It defines the patients who are “the best” candidates for management on active surveillance (AS); it addresses issues that complicate men’s willingness to see AS as a sensible option; it notes that AS is close to being the de facto “standard of care” for men with very low-risk prostate cancer; there is concurrence between the participants that Gleason 6 cancer is still “cancer” and should not be re-defined as something else.

However, when one reads the article one can almost feel and smell the cautions with which the discussants approach the whole issue of who should be offered and placed on AS. And the more likely it is that a patient would never need treatment, the more comfortable the discussants seem to be with the whole idea of managing patients this way.

Your sitemaster, however, has a whole different mindset about the role of AS in managing low-risk and some forms of intermediate-risk prostate cancer today. He believes that most patients who meet appropriate criteria should be strongly encouraged to consider AS as their first-line management option (unless there are really good reasons for implementation of some other form of management). The whole point of AS is that it helps many if not most men with relatively low-risk forms of localized prostate cancer to maintain their quality of life until treatment is actually necessary. Why wouln’t a doctor and his patients want to see such an option as being a high priority?

As noted in the article, there are certainly going to be men who have other prostate-related problems (BPH, prostatitis, prostate stones) which, when combined with a low-risk prostate cancer, would suggest that treatment was a good idea because it would resolve all of these issues at one go. But these patients are not in a majority.

Physicians are cautious by nature and change in medicine takes time. Physicians worry a lot about what can go wrong if they change their standards of practice. But it seems to your sitemaster that a lot of physicians still haven’t fully grasped the devastation that has been cause over the past 30 years by the aggressive, early treatment of relatively low-risk forms of prostate cancer: treatment that could certainly have been delayed until it was clearly needed or which might never have been needed at all.

An there are other things that are simply not addressed in this article at all:

  • Which patients with Gleason 3 + 4 = 7 are still relatively good candidates for AS?
  • What can patients think about doing that might increase the probability of being able to stay on AS for extended periods of time?
  • How can patients be helped to deal with the inevitable anxiety that many will feel while they are learning to become comfortable with AS?

Your sitemaster is fully appreciative of the fact that AS simply isn’t going to be the form of management that “works” for some men. They want early therapy. And they are entitled to get it if that is what they want. But if AS is being presented to patients with a whole series of overly cautious provisos as opposed to a simple clarity that the first priority is to defer treatment until everyone agrees that it is necessary, then we aren’t giving newly diagnosed patients the correct, simple message.

The only group of patients for whom we can reasonably think that AS may be an appropriate form of management “for the rest of their lives” are patients with very low-risk forms of prostate cancer. Everyone else should be reasonably well aware that treatment of some type may become necessary at some time in the future. But exactly how that information is presented to the patient may be a critical factor in his ability to “hear” what he is being told.


11 Responses

  1. Thanks as always Mike. What strikes me as driving the caution is the very reasonable fear of undergrading; comes through in a lot of areas. I think they are addressing the large number of physicians and patients out there who are making decisions based on 12-core TRUS, where caution is indeed warranted.

  2. Dear SUM:

    I think most of what is driving this here in the USA is actually fear of lawsuits more than anything else, as in, “You didn’t tell me I had CANCER” and/or “You told me I didn’t need immediate treatment and now I have metastasis”. You have to live within the US heathcare system to understand just how much of a problem this is here. In the UK and other systems, “caution” might be a problem, but it isn’t the fundamental issue here.

  3. Dear SM:

    You nailed it by recognizing litigation as a prime motivator. I suggest that is also the reason why indolent (benign) 3 + 3 continues to be called “cancer”. An additional problem in Canada is our single payer system. Ultimately the Government decides one’s treatment by effectively and definitively placing boundary conditions beyond which physicians dare not tread. For example, no billing code exists for patients to obtain a non-invasive, liquid biopsy requisition which they would be paying for. Further to that, extra billing is forbidden. Be thankful you have not gone there — yet!

  4. Maybe The Supposed “Side Benefits” (e.g. prostatitis) of Radiation or Surgery for Prostate Cancer Aren’t So Beneficial in Reality (Re the “As noted” paragraph above)

    For years I have believed that treatment for men with prostatitis with low-risk cancer was at least providing a benefit in getting rid of their prostatitis. Now I doubt that, and indeed suspect that the prostatitis is made worse.

    This is based on a talk by Dr. J. Curtis Nickel, a Canadian expert in prostatitis, who presented at the 2017 Conference on Prostate Cancer in Los Angeles last September. I viewed his remarks on Disk 1 of the conference DVD set. He addressed both radiation and surgery for such patients, raising concerns about both.

    Regarding radiation, during minutes 27:58 – 28:30, he said about previous or concurrent prostatitis that “I’ve gotten to the point now, that I recommend patients who have prostatitis symptoms and prostate inflammation to really have a doublethink before they have brachytherapy or before they have [external beam] radiation therapy, because those patients are at risk to develop something that is extremely difficult, almost impossible to treat.”

    Regarding surgery, therefore with patients who no longer have a prostate (minutes 30:17 – 31:29), he said that patients seem, present, and act the same as patients of the same age with prostatitis without prostate cancer who have prostates. Treating prostatitis patients without prostate cancer with a radical prostatectomy is almost malpractice, in his opinion, because it doesn’t work that well and it causes all the disabling problems of a radical prostatectomy. He explained that, for patients who no longer had a prostate after surgery, prostatitis is a neuromuscular problem, a neuropathic pain syndrome.

    He added, “For years I have believed that treatment for men with prostatitis with low-risk cancer were at least getting a benefit in getting rid of their prostatitis. Now I doubt that, and indeed suspect that the prostatitis is made worse.” Wow!

    He emphasized that the impact on quality of life is substantial. For instance, he stated that there is pelvic pain rated 7 to 10 out of 10 and that dysuria can be extreme burning on passing of urine.

    I realize that Dr. Nickel is just one urologist, and some of what he related was based on his years of experience but in the context of a dearth of published studies. He appears to be a highly regarded expert in prostatitis.

  5. Dear Jim:

    There is a wide spectrum of types of prostatitis, and I think that a lot of other urologists would observe that there are no other treatments at all that work to help men with severe, chronic forms of this disorder. What is Dr. Nickel actually suggesting that such patients should do?

    In at least one series of patients with severe, chronic prostatitis treated by one expert surgeon, the results were a great deal better than Dr. Nickel seems to have been suggesting, And we all know that when it comes to surgery the skill and experience of the surgeon is of paramount importance. And I don’t actually know of very many published series of such patients anyway.

    Frankly, I can’t imagine why anyone would think that radiation therapy of any type would be a good idea for men with chronic prostatitis.

  6. Sitemaster, replying to your comment of 7:08 am –

    Of course you are raising a key question for men with prostate cancer who also suffer from urological infection/inflammation and would like to avoid the dire scenario presented by Dr. Nickel for prostatitis pain results after treatment. Hopefully a patient will ask that question in the Meet the Speaker Q&A, which I have not yet viewed. Dr. Nickel did not directly address it in either his presentation or the following Q&A by co-moderator Dr. Mark Moyad. I did have the impression that he regards surgery as less risky than radiation from the standpoint of post-treatment prostatitis side effects for men with substantial pre-treatment or concurrent prostatitis symptoms, a view which is consistent with research mentioned in your reply. He noted that some men with prostatitis might want to give active surveillance extra weight in the treatment decision process.

    I would like to emphasize the selectivity of the clinical experience upon which Dr. Nickel is relying — on which he emphasized he is obliged to rely in the absence of sufficient research. It is clear from his talk that many other doctors refer their post-treatment prostatitis problem cases to him, so what he experiences in his clinic is very far from a random sample. The question for us is whether the problems he is seeing represent most of the iceberg or just the tip of the iceberg. Dr. Nickel is quite aware of this uncertainty, but he is disturbed by what he sees, and he seems to have made an intelligent judgement that the problem may be underappreciated. He is a strong advocate of more research in what he clearly considers an underfunded research area of great importance.

    Beyond the dilemma of prostate cancer treatment choice for patients with substantial prostatitis, Dr. Nickel did discuss some tactics for ameliorating the prostatitis, though he bemoaned the absence at present of any highly effective measures. In fact at minute 14:23 he presented a slide titled “Treatment Is Really Dismal” for chronic prostatitis/chronic pelvic pain syndrome. He said that antibiotics work for 60 – 70% of bacterial prostatitis, but that that type is fairly uncommon and treatments for other types work about 40–50% of the time. He emphasized that treatment needs to be highly individualized. For instance, for patients experiencing prostatitis who no longer had a prostate (which I would have regarded as impossible before viewing his presentation), he suggested: (1) treatment as a chronic neuropathic pain syndrome with conservative therapies such as heat and physiotherapy or neuromodulation (amitriptyline and gabapentinoids), and (2) other clinical phenotype directed therapy such as muscle relaxants, physiotherapy, alpha blockers, antibiotics, and psychological support. (About minute 32:29 on the DVD)

    Here’s more about Dr. Nickel’s position in the field. While being invited as a speaker at the annual PCRI/Us Too Conference on Prostate Cancer in Los Angeles each September is itself an indication of prominence, he is clearly a prominent urologist in the eyes of his peers. For instance, Dr. Nickel served as chairperson on the 2012 American Urological Association annual meeting plenary session expert panel on Optimizing Care for Urologic Chronic Pelvic Pain Syndrome. He is the Canada Research Chair in Urologic Pain and Inflammation. He is a professor of urology at Queen’s College in Kingston, Canada. He is also author or co-author of a number of urological research papers.

  7. Dear Jim:

    We are discussing several very different prostatitis scenarios here:

    — “Common” forms of bacterial prostatitis that are treatable with antibiotic therapy. These are relatively trivial so long as the infectious bacteria can be identified and are not antibiotic resistant.
    — Virally induced forms of prostatitis, which can be a great deal more difficult to treat because it can be very hard to detect exactly what virus has caused the problem and there may or may not be an agent that can resolve such an infection which can lead to inflammation of the prostate and consequent pain.
    — Inflammatory forms of prostatitis whose cause is unidentifiable, and for which there are commonly no good known forms of treatment (although all sorts of things can be tried)
    — Neurogenic/neuropathic forms of prostatitis, which are often of unclear origin and which are often treatable — but also often not very effectively treatable
    — Post-surgical, usually neuropathic, forms of prostatitis, which may or may not be treatable
    — Severe, chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) in men who do not have and have not had any form of treatment for prostate cancer and whose CP/CPPS has not responded meaningfully to any other form of therapy; such forms of CP/CPPS can be utterly debilitating, can respond very well to radical surgery, and are the only form of prostatitis that — in my opinion — should be treated by radical prostatectomy (and also only after a careful explanation to the patient of the various risks and benefits)

    It is critical to distinguish very carefully between each of these conditions. No one except those in the very last group should have or even consider an RP just because they have prostatitis.

    There is a whole different issue which is whether some men with prostatitis and prostate cancer are at risk for more serious forms of post-treatment prostatitis of a neuropathological type (which may in some way be related to the type of therapy administered and the skill of the physician treating them). I don’t believe there are any good data on this, but there is certainly a subset of patients who appear to suffer from various types of neuropathic pain that seems to be associated with treatment for prostate cancer after surgery. This may have a lot to do with the individual anatomy of the patient and the skills of the surgeon.

    The bottom line is that, unless one has simple, uncomplicated bacterial prostititis, there are no really good treatments that work for most prostatitis patients for extended periods of time unless removal of the prostate can resolve the problem. And very few urologists (I actually know of only two, one in the US and one in the UK) who have done enough of these operations to demonstrate that it can be done well … and both of them believe, as I say, that it should only be done if the patients have refractory, debilitating forms of CP/CPPS and after a detailed discussion with the patient.

    I am not questionning Dr. Nickel’s credentials or expertise on the management of prostatitis and prostate pain. However, your second comment above provides a very different “message” for the reader than your first comment. Dr. Nickel was clearly differentiating between the various subsets of prostatitis patients in his presentation and your first comment did not address these very critical distinctions. I know of no one who would treat simple prostatitis or even chronic prostatitis/chronic pain syndrome with radiation therapy. There is no rationale for this that I am aware of.

    I suspect that Dr. Nickel himself would tell you that he is commonly seeing a select group pf patients who have been referred to him because simple forms of treatment for prostatitis administered by other urologists haven’t worked or because the patients have some form of prostatitis secondary to treatment for some other prostate problem. Almost all such patients are inevitably very hard to treat.

  8. Going back to the subject, people looking at AS should also look at the speed of advances being made in treatment. Including at the late stages which are the nightmare risk. So don’t look at the world now, but in (say) 15 years. Then look back 15 years to get the idea. Or, as the Consultant at my most recent appointment agreed: “the profession is getting better faster than I am getting worse.”

  9. Sitemaster, regarding your comment of 8/31 8:03 am regarding prostatitis, thank you for your attention to this important subtopic. Your comment lines up well with what I understand of Dr. Nickel’s talk. While I know quite a bit about prostate cancer, I feel like a real novice when it comes to prostatitis, and the important distinctions and viewing points are unfamiliar.

    As SUM notes, this subtopic is a tangent, but I’ll bet a lot of us would like to know more about it. I’ve tracked the annual Conferences on Prostate Cancer in LA pretty well over the years, and I believe this is the first time they have ever had a speaker devote his presentation to prostatitis. On the off chance you ever have some spare time at one of the important conferences you attend and get a chance to cover a related talk, I’m sure a lot of us would be interested.

  10. How do I make sure I see all posts?

  11. Dear Hugh:

    Simply click on “Entries RSS” in the header at the top of this page.

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