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Alan, rather than put this thread to bed, I would like to mention how with my case, 7 years of active surveillance quickly turned into radical treatment at the blink of an eye.
Having a low volume Gleason 6 cancer, I had been enjoying active surveillance since 2007 with regular PSA testing and not so regular biopsies (the original poster, Roger Carnell and I had emailed each other a couple of years ago about our mutual dislike of routine biopsies).
Anyhow, my stable PSA history quickly showed an upward spike and so I reluctantly chose to have a third biopsy, but this time with a multiparametric 3T MRI, which identified a "suspicious area with indications of intermediate to high grade". The following day, the fusion transperineal biopsy targeted this area and diagnosed a nasty 4+5=9 tumour. We had to move quickly and two weeks later on 6th August I had a da Vinci robotic prostatectomy. This was also the day my hero Terry died after years of inspiration.
So has this experience changed my opinion about active surveillance as being a safe strategy? Actually no, it hasn't. I can look back at seven years of an amazing trouble free life (half of that in retirement) when I was fully functional, rather than like now sticking needles into myself, hoping that one day I might recover a natural response.
I was one of the world's biggest fans of active surveillance, and still am, but one thing I have learned is the importance of truly being "active" rather than as it was in my case, "reasonably active with plenty of PSA tests, but only having a biopsy when PSA trends suggested I did so". I now believe that routine biopsies are important, and it is imperative that they are done in conjunction with a 3T MRI scan. I my case, the Gleason 9 tumour was only 10 mm diameter, clearly seen on the MRI scan, but easily missed with a blind scattergun random biopsy.
All the best to everyone for Christmas. It will be a hot one, but a cool drink is never far away.
Brian: So glad to have your update and wish you all the best.
John (insert whatever alias you currently use): That is the least sincere Christmas greeting I have ever read. In respect for the season I am trying my best to forgive you for all of your "misinformation" nonsense and disrespect toward Terry when he was with us.
Roger thank you for your christmas greeting, the sincerity issue of course not withstanding. May I reciprocate in kind.
My misinformation nonsense as you infer, has seen many men on this board seek active treatment, and for that I make no apology.
This board under Terry's tutorage was always a cauldron of diverse viewpoints, ranging from conventional science based to downright loopy. My concern was always for the newly diagnosed men being prime targets for loopy ideas. Terry and I had divergent viewpoints on some things, but to suggest that my interactions with Terry over such a long time were disrespectful is quite incorrect. Frankly I think you should withdraw that remark.
Brian upon reading your story, I see you are indeed one of Terry's disciples pushing the AS wheelbarrow. The situation you ended up with (high grade gleason 9) was indeed forseeable and predictable, hence my ongoing critique. You indicated that you had an enjoyable time on AS. Was that enjoyment fostered by an inability to comprehend the disease progression that was taking place in your body? Contrast that with the reality of finding out you had high grade disease that required urgent treatment? By your own admission you chose AS without the necessary surveillance (biopsies). Please explain why?
Sorry to be so blunt Brian, but I have seen your story over and over again, and the outcome in most cases follows the same pathway. I hope your post is a salient warning to men seeking to embark on the journey you chose.
Re: Another report on Active Surveillance (The Needs of the Many Outweigh the Needs of the Few...)
"The needs of the many outweigh the needs of the few, or the one." Some of you that watch movies may recognize this quote from "Star Trek: The Wrath of Khan". It is not only the central theme in the movie, it is also a guiding principle of mankind that transcends nations in decisions big and small. For example, there is no greater decision than to send soldiers to fight a war in which many will lose their lives in the struggle. Yet, in a noble cause, like the fight for independence, the needs of the many (the nation as a whole) outweigh the needs of the few, or the one (those who give their lives for this greater good). There are, of course, every day smaller examples, like decisions made by your local town government that are intended to benefit most of the citizens, with the understanding that you are not going to be able to please everybody.
Okay, I am writing on this subject because this principle is just as prevalent in the world of prostate cancer as it is elsewhere, and men like John Bonneville don't seem to get that. I will cite a few examples to make my point. First, at the uppermost level, The United States Preventive Services Task Force (USPSTF), and similar organizations around the world, have come out against PSA based screening for prostate cancer. One of the reasons why is that these screenings have led to the overtreatment of millions of men with low risk cancer. In making such a ruling, they no doubt realize that, without a PSA test, some men with an aggressive cancer will suffer (and possibly die) as a result of discovering their cancer in its late stages when symptoms develop. So, in this scenario, again, the needs of the many (those millions of men being over-treated) outweigh the needs of the few (those men who would have benefited from a PSA test that they didn’t get because they failed to ask for it themselves). Clearly, John, in his postings has shown himself to be against such a ruling.
Which brings me to my second example; when he used Brian Watts post regarding the follow-up discovery of a Gleason 9 tumor after seven years on AS as a reason why it is a mistake for men to choose that course. In this case, John has chosen to ignore the needs of the many (the majority of men who were able to put off invasive treatment for years without any statistical difference in long-term outcome when compared to immediate treatment) in favor of the needs of the one (the possibility that Brian may have benefited from earlier treatment). Likewise, following this same line of thinking, John finds it unacceptable that 15 (or 1.5%) of the men in Dr. Klotz’s follow-up study on AS for low risk patients died from prostate cancer even though it meant saving 810 men from being over-treated.
My last example shows the hypocrisy in John's position on AS because, when he comes out in favor of immediate treatment in all cases, he is supporting the needs of the many (those men who will benefit from early intervention) over the needs of the few (those who never would have needed treatment, as well as those who will suffer from debilitating long-term side effects and/or eventual recurrence). Also, there is no doubt that John supports the use of medications which help many, yet take the lives of a few.
Personally, the dichotomy in his thinking makes no sense to me.
Alan M in the USA
Re: Another report on Active Surveillance (The Needs of the Many Outweigh the Needs of the Few...)
I don't feel like answering John's posts, because his abrasive and argumentative approach is not what this forum is all about, but I will make these comments:
1. I feel perfectly happy about having spent seven years on "active" surveillance and am glad I did not have radical treatment earlier.
2. I had a total of 28 PSA tests over an eight year period and these were reducing (actually reduced by 70% while on Avodart) or remained stable and non-alarming throughout the surveillance period, except during the last year when my PSA spiked up from 2.28 to 3.16. This is what prompted action and subsequent radical treatment.
3. The Gleason 4+5=9 tumour was in a different location to the 3+3=6 results of the two previous biopsies, so there is no justification in claiming that there was "disease progression taking place" in my body. In fact my surgeon believes that the small Gleason 9 tumour probably got going in the final year and only when the PSA started going up.
4. I have been reading about prostate cancer continuously for the last eight years and have probably spent a thousand hours or more reading articles, forums, clinical studies, attending conventions and support groups. I was a professional Consulting Engineer (now retired) with good judgement and an enormous ability to be analytical. Comments by John like my "inability to comprehend" implies I have no idea what is going on and is both rude and insulting.
5. Active surveillance worked well for me. I was always totally calm and stress free, It gave me extra years of trouble free living, but PSA monitoring enabled me to recognise when taking action was necessary. I had a successful prostatectomy with clear margins and nodes.
6. I will be making no further comment in this or any other thread that John Bonneville (or any of his aliases) partakes in.
The Needs of the Many outweigh the needs of the few?????
When medicine has a tool to facilitate life (i.e. PSA screening and thus early detection, particularly in advanced disease) to do otherwise runs contrary to everything I believe in. When we as a society accept the principle of sacrificial lambs as the norm, then we as a society are decidedly lacking in humanness in my view.
When the needs of the many outweigh the needs of the few, medicine steps into the political arena. Who among us is comfortable with the notion of simply letting men die because they are among the few?
Re: The Needs of the Many outweigh the needs of the few?????
You can get off your moral high horse. Nobody is talking about letting men die so that millions of men will not be subjected to overtreatment. In fact, because you are, no doubt, a well read and educated man, I believe that you already know that to be true, unless you refuse to even read the recommendations of the USPSTF (or the equivalent organization in your country: Cancer Council Australia. That’s right John. These two organizations in our respective countries agree on "informed choice" as the solution that will hopefully prevent the overtreatment of millions of men while allowing those men that truly need PSA screening to get and benefit from it).
To be more specific, this is the recommendation of the USPSTF: "Physicians should not offer or order PSA screening unless they are prepared to engage in shared decision making that enables an informed choice by patients. Similarly, patients requesting PSA screening should be provided with the opportunity to make informed choices to be screened that reflect their values about specific benefits and harms." Now, take a look at what the CCA has to say about it (paying particular attention to the common language in both statements): "For men informed of the benefits and harms of screening who wish to undergo regular testing, offer PSA testing every two years from age 50 to age 69, and offer further investigation if the PSA is greater than 3.0 ng/mL."
Now, as I stated above, these recommendations, once enacted upon, have the potential to save millions of men from being over-treated and still meet the needs of the men that are truly in need of PSA screening. The problem is that far too many in the medical community are like you in that they turn that blind eye that I spoke of earlier to this solution that can take care of the needs of all men. Instead, they go right on providing PSA screening for their male patients and, as a result, they are contributing to the disturbing overtreatment problem. As I said in an earlier post, I believe that one day conversations with doctors that lead to informed choices will be the norm, but sadly I think that the change will be so slow as to not see this problem corrected in our lifetime. So, John, to use your words, until such change comes about, I see the "sacrificial lambs" as being these millions of over-treated men.
In closing, when Terry passed** and I saw you take the opportunity to undo much of what he tried to accomplish in helping men understand the AS option, I said to myself that I am not going to let Terry’s old nemesis tear down AS on this forum, and I hope to continue to have the help of the likes of Fred Wood, Roger Carnell and Brian Watts in my desire to honor Terry's efforts by picking up where he left off. That being said, John, you exhaust me, and maybe one of your goals is to wear down your opposition because you are doing a pretty good job of it (already you have Brian refusing to address any more of your posts; which is something I hope he reconsiders). On my end, twice I have attempted to end this thread to no avail. So be it. If you continue to spread "misinformation" about AS, I will do my best to counter it. The losers, of course, will be the readers since they will have to put up with the addressing of each other's posts with words that have all been used before. So, for the third time, I am asking you to give it a rest… at least for the holidays for God’s sake!
**God, how I miss his postings on this forum; it is certainly not the same without him.
Well Alan congrats on the Aussie Cancer Council new guidelines for prostate cancer (PCa) detection and management. It would seem that you have found my achilles heel or have you? Perhaps some background is in order.
PSA testing commenced in Australia in 1989. From a meagre beginning back then with only 1% of targeted men tested, today the figure is approaching 20%. The impetus for testing came about due to concerns expressed by the Royal Australian College of Urologists and to a lesser extent by Radiation Oncologists. Many service organisations throughout Australia, but in particular the Lion’s of which I am a member, sort to raise prostate cancer awareness through community forums, directed advertising, and mail outs. The rationale for doing so, was premised on the evidence that prostate cancer was the second leading cause of cancer related deaths among men in Australia. Needless to say a dramatic jump occurred in the diagnosis of PCa as a result. A goodly number of men who would have otherwise progressed to advanced PCa, of which I was one, received active treatment and had satisfactory outcomes both in disease free progression and quality of life. The local prostate cancer support group of which I am a member is testimony to that. Needless to say some men did experience some side effects from active treatment. I checked with former colleagues and approximately 5% of men undergoing radiotherapy (and yes I was one) did sustain some morbidity, mostly in the form of radiation proctitis, which for the most part subsides over time. The centre I am referring to, treats over 1200 men annually. Sadly I have not been able to unearth any recent Australian morbidity data for radical prostatectomy (RP), but of course we do know that RP can have side effects of erectile dysfunction (ED), urinary incontinence and a reduction in penile length. But we also know that untreated localised PCa can over time cause urological issues related to tumour bulk thereby causing obstruction sometimes necessitating a transurethral resection of the prostate (TURP) (again, lucky me as I also had one of those as well). A TURP can of course can result urinary incontinence and cessation of ejaculation. The other issue with untreated localised PCa is of course, disease progression both locally and distant.
Now in response to the Australian Cancer Council new guidelines let me make the following observations. Most of the recommendations are contentious and the report acknowledges this. Dissenting views from expert medical opinion is acknowledged and none of the report recommendations are binding on clinical practice. So Alan where does that leave us? Well with precisely no change whatsoever, in my view. Physicians can continue to screen as they choose, informed patients can still make requests to be screened, and community organisations are still going to promote prostate cancer awareness among targeted men and their spouses. Needless to say there was also a political agenda afoot, but we shall save that chestnut for further discussion.
So Alan we have a quandary, either we embrace your do no harm strategy, or we continue on with the current status quo. I know what will happen here in Australia, but of course I make no such claim about the land of the free. We also need to factor in that here in Australia we have a socialised health system, where all Australians can access relatively free quality health care based on their needs not on their socio economic status. On your side of the globe, I understand the user pays is the norm, insurance cover of course notwithstanding, but none the less a direct link to socio economic status is prevalent.
Alan, where did such well intentioned individuals here in Australia such as my good self get it so wrong? Was alerting men to the dangers of PCa such a disservice? Was promoting prostate cancer awareness in the community tantamount to misinformation?
As someone who in all probably, would have been kicking up the daisies myself, I am somewhat reluctant to criticise what has occurred here in Australia. A good many lives have been saved through the process of early detection. Whilst I concede that some morbidity is associated with active treatment modalities, “does the plight of the few (those with active treatment morbidity), outweigh that of the many (PCa survivors) who otherwise would have passed on?
In respect to using Terry’s passing as a means to kick active surveillance (AS), I ask you to withdraw Alan? That was never my intention. Suffice to say my views on many matters relating to PCa go back a long way on this forum. I think it opportune to use the new year to finally let Terry rest in peace. Before he died, Terry and I had a number of private discussions on a number of matters. Suffice to say I gave Terry an undertaking, which I have thus far not breached. By all means cite the little gems that Terry used to come out with, but please refrain from using his memory as a wedge against me. What occurred twixt Terry and myself is in the past and that is where it should stay. I of course can defend myself, Terry cannot. Hopefully enough said? I trust you understand.
p.s. take your time in replying to this post as there is a lot to digest and rebut!!
Re: Back to the Trench Warfare!! (My New Year's Resolution)
What happened to: "To be continued post festive season!!” You couldn't wait until after New Year's Day? Okay then. I have an early New Year's resolution to introduce.
I will no longer engage in a back-and-forth debate with you henceforth. When I read your rebuttals, I get the impression that you seem to be enjoying this. I do not! I don't know if you get syndicated American reruns in Australia, but this ongoing argument over the fundamental differences in our philosophies reminds me of the old sitcom "All in the Family" with Archie Bunker and Mike Stivic constantly arguing their positions despite the fact that neither one was going to change their thinking based upon what the other had to say. By this time, we have both made our positions very clear to the readers, and to proceed serves no useful purpose other than to tie up the forum with repetitive information and statements.
Now, I realize that what I am saying seems to nullify the following two statements in my last post: "I am not going to let Terry’s old nemesis tear down AS on this forum", and "If you continue to spread "misinformation" about AS, I will do my best to counter it." The reality, though, is that I am not walking away from this. Instead, I am just going to handle it in a more constructive manner. What I mean by that is this: if a reader writes on the subject of AS, I will only address that person directly, even if I am countering what you have to say (and as far as countering your position is concerned, I am very likely to simply refer that reader back to this thread since they can go back into the index, read both sides and decide for themselves. In that way, the everyday reader is spared from having to read through all of that which has been said before).
A good way to start off this new plan is by letting you know that I have no comment on your last post (and believe me, it is not easy for me to say that. I have OCD and, up until now, my nature would compel me to respond when I disagree with something and can back up my position with facts, but as we have seen in this case, that can cause the thread to go on ad nauseam). So, it's a new year (or will be soon enough) and it's time for a new start.
In an effort to be clear on the disagreement we have on this topic it is my understanding that you are OK with AS using the Australian AS protocol. This protocol is very close to what we have in the U.S. Therefore the only real difference you
have with me and others on this forum is your personal view that it should only be used on men with less than 10 years to live. There are no large U.S. medical institutions that have this limitation in their AS protocol currently. So the newly
diagnosed man simply needs to decide if John's view trumps these medical institutions view on AS.
Fred I think we need to clear up some misconceptions here, less I be misrepresented.
I do agree with offering AS to men with a life expectancy of 10 years or less. Surveillance in this circumstance need not be quite so robust.
I have no problem in men with Gleason 6, T1 to T2a, and with a PSA less than 10, being offered AS. However my caveat would be, that the surveillance does indeed need to be active, particularly in younger men. By active I mean, quarterly PSA, six monthly DRE and yearly biopsy and MRI scan. I would consider the following to be trigger mechanisms for active treatment;
- PSA doubling in twelve months or less
- Tumour bulk progression to T2B or greater
- Palpable nodule on DRE
- Asymptomatic patients becoming symptomatic
- Gleason score progression to 3+4, when the pattern 4 component is more than 10% of the pathological review. 4+3 would be an instant trigger.
I express my skepticism re the surveillance being as active as I would like. Wiithout it as some on here have done, AS becomes Russian Roulette.
I also conceded that yearly biopsy does carry the real possibility of sepsis.
So are you saying you are OK with AS in younger men with more than a 10 year life expectancy as long as they follow a strict monitoring protocol, such as you describe, and seek definitive treatment when they break the protocol?
If this is the case, we are in agreement.
Also, if this is the case, I don't understand why you were opposed to Rene's husband considering AS.
Fred I have yielded some ground in relation to AS recently, namely T2A and 3+4 and <10%. I trust the AS disciples on here will acknowledge that concession.
My comments to Rene still stand however, particularly in heeding the fact that PCa tends to be more aggressive in younger men. Rene's husband could have surgery, make a good recovery as most men do, and get on with their lives, or he could stay on AS with the protocol that I have described, the choice is their's. Literature tells us that active treatment will be required at some point, either it will be at a time of Rene and her husband's choosing, or when a trigger has occurred.