PC: GUIDELINES for who needs treatment, who does not.

Good point Purg.

Paul

Actually, I am in a position to rescue Medved's nervous AS candidate from the realm of the merely hypothetical. [ Breaks into a stirring rendition of Lancelot's song "C'est Moi" from Camelot. Yep, it's me.

Prior to surgery I had had exactly one positive core out of four biopsies, that core was reviewed by two pathologists. They agreed that there was a very small percent involvement. One of them called it Gleason 6 (3+3) and the other Gleason 7 (3+4). My PSA never got above 8 something.

My urologist knew I was nervous so he was trying to sort of slide me into AS without calling it that. We talked about AS when I was diagnosed (3rd biopsy) and and without asking me to commit to it, he said "Tell you what we can do. How about we schedule you for another biopsy in three months to help you decide and we'll check your PSA then to see what it's doing. How would that be?" For those of you who are keeping score, that's a "confirmation biopsy" plus ongoing PSA testing for a man just diagnosed with low risk disease. Does that sound like anything to you?

I also consulted with a second surgeon. He expressed willingness to do the surgery if I wanted but recommended strongly against it. He knew my urologist. Most DaVinci hot shots tend to know each other. He certainly knew that my urologist would watch me closely. So he was -- sort of -- recommending AS when he suggested that I "Trust God. Try not to worry. Live your life. Be happy."

My fourth biopsy was negative but my PSA had gone up about half a point. My urologist was kind of surprised when I decided to go with surgery. Arguably, my reasons had little to do with recognized medical necessity. My wife's father had recently died of prostate cancer and my having cancer scared the crap out of her. And then there was my irrational problem with the AS "lifestyle". By that point I was pretty tired of men in white coats poking spring-loaded gizmos up my butt. I was hoping I could make that stop.

So, like I said, Medved's hypothetical man? Voilà! C'est mou!

So let's take stock of this thread so far, from my point of view. I have no factual disagreements with the 25 numbered sections of the overtreatment manifesto that starts the thread. It doesn't apply to me because I have already been treated and it's too late now, besides this thread is about changing the world. There is also the difficult fact that my girlish panic and my dash for the exit did probably save my life. But I am a statistical anomaly. Really, I am. I recommend AS to new guys all the time ignoring the statistically small chance that they might be misdiagnosed Gleason 9s like me.

I routinely scold members for saying that this group or that group is being "thrown under the bus", but I will point out that the left rear tire is pretty worn and I think there may be a transmission fluid leak. You guys might tell the driver.

So where was I? Oh yes, this thread so far.

MsWW, possibly the nicest and best person I know, suggested a lobotomy and Purgatory thinks that my insurance company should have prevented my surgery. MsWW was joking, so that's alright. And Purgatory makes an interesting point. I can see his logic. Insurance companies are statistical creatures and can't be expected to behave otherwise. And overtreatment is real. So...

Did I mention the transmission fluid? I did? Ok, thanks.

From time to time I complain about matters of tone. People assume I am merely finding myself overmatched in an argument about factual matters and am grasping for some reason to rebut. Fair enough. Possibly. I am quite possibly standing too close to my own head to see what's going on in there. But I do see some other guys. You know who they are. The troublemakers.

Oddly enough, on the support threads the toublemakers never seem to make any trouble. They give well-intended advice, usually pretty well in the mainstream. They respond just like the rest of us to requests for thoughts and prayers when things aren't going well for someone. It's really hard to tell them from the rest of us. It is only on polarizing "how things ought to be" threads where they see themselves reflected in the hypotheticals, become angry and defensive, use bad language and, frankly in some cases, go quite insane.

We talk about rule three a lot here. But I'm not sure we think about it very much. Here it is

3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated.

For us moderators it is tempting to enforce the first and last sentences. They are easy to decide. People who are obviously angry, making personal insults, or using bad words stand out. We mostly all recognize flaming when we see it. The angry individual is asked to calm down or leave.

It's that other part in the middle that's tricky. We are supposed to respect all opinions. But what if someone's opinion is wrong? There's a dilemma. Do we waste a lot of time trying to understand him? He's wrong, after all. Or do we get out the old bullhorn and tell him "Shut up! SHUT UP! The internet can see us here! There may be hundreds of newly diagnosed guys reading this thread right now! YOU ARE OFF MESSAGE and you will need TO SHUT UP NOW OR THE MODERATORS WILL HAVE TO EVICT YOU.

Oh, and the brakes smell hot. Tell the driver that, too.

toyoung said...
With the advancement in 3T MRI's imaging, MRI guided biopsy's and the development of Gene testing the chances of not finding a more aggressive cancer are very slim. It seems any report saying that AS is very risky hasn't considered these tests. If someone is diagnosed as low risk or very low risk these tests should be performed before any treatment decision is made. My original Urologist who diagnosed me with Pc did not recommend these tests. All he said was my choices are AS, Surgery or radiation and for my age he recommend surgery.

"If someone is diagnosed as low risk or very low risk these tests should be performed before any treatment decision is made."

I asked my uro about the gene testing and he said there was not enough cancer found in the one core to do it. I haven't checked this; took his word for it. As to the mpMRI and guided biopsy, this seems entirely logical to me.

When I first came here 2 months ago with my low risk diagnosis, I was looking for sympathy, empathy, and confirmation that I was low risk. I got all that and more from the forum, and I'm thankful. The thing is, the evidence for my risk assessment is inadequate. We all know that a TRUS biopsy is woefully deficient in sampling the entire prostate gland. What mine found was just enough to tell me I have cancer, but not enough for me to make any informed decisions on how to manage it, yet I made one anyway. In my case I've already decided to have proton therapy in January, but still will be having a mpMRI next week to see what else they find. If my risk increases I may start treatment sooner.

I'm surprised to see that the NCCN guidelines for low risk don't mention getting further testing to confirm the low risk diagnosis. Basically for me they would recommend PSA and DRE every 6 months and biopsy in 18 months. Nothing about having a mpMRI.

Post Edited (hrpufnstuf) : 8/17/2014 5:22:45 AM (GMT-6)

Peter,
Your case was rare and so was mine. There are always exceptions to any medical recommendation and you can't base best practices on exceptions. Fortunately I found a doctor that knew what he was doing and immediately knew that my 1 core G6 <5% didn't match any of my other biological markers. With your psa of 8, what was your psa density? A < 5% tumor leaks very little psa and you psa should have matched your prostate size times 1. You should have had an 80cc prostate for a psa of 8. You also didn't get a confirming MP-MRI or CDU that could have spotted a larger or more aggressive tumor. Also one of your pathologies came out a a G7, was it verified by an expert pathologist?
I guess what I'm saying is that there were signs that we both had something other than what our biopsy indicated; this is why a confirming scan is always recommended for those considering AS.
When I was Dxed I didn't know any of this and neither did my 5 previous doctors. In my case the 10 year delay didn't affect my outcome, in your case perhaps it did, but that is only conjecture.
Rare cases like ours will always happen; they are out of the statistical norm.
As in any other treatment a patient considering AS should find an experienced doctor specializing in AS that uses the latest scanning technology, and cases like ours will be identified much earlier as true status of our disease would have been discovered. Using only two markers, biopsy and psa will lead to a high % of misdiagnosis. Using all of the available tools, psa, pathology by an expert, the various tests currently used by Bostwick labs, scanning, ect. to enable an experienced doctor to see the whole picture will go a long way in eliminating the risk of someone going on AS with something other than low risk status.

medved said...
Jack's point about some people well-informed "electing" to be "over-treated" is an interesting one. What I mean by that is there could be a guy who, objectively, most experts would say should do AS. But he personally cannot tolerate AS, psychologically. It would bother him every day and interfere with his enjoyment of life. Is his treatment really unnecessary, or "over treatment"? Maybe in his case, it is not over-treatment. He needs to be treated -- not from a (pure) urology point of view, but from a psychology point of view.[/quote



Now it's still over treatment and will be considered more and more so as time goes by. No way should a doctor do major surgery because of a psychological need from the patient. Remember part of the Hippocratic oath is "do no harm"

Post Edited (Ziggy9) : 8/16/2014 5:33:14 PM (GMT-6)

John,

I seem to recall that by the time of surgery my prostate had shrink to a mere 93cc. I had been taking Avodart for years and it had shrunk from a pretty impressive size. So my PSA density was sort-of OK except that with the Avodart it maybe should have been lower. On the other hand my urologist had been treating me for a long time for a recurring bacterial prostate infection so my PSA levels were only so informative.

I generally recommend AS for guys who appear to qualify but it is comforting to me if they have access to one of the more rigorous AS programs that uses advanced scanning for the initial confirmation. I had a fairly sizable tumor in one of those locations where a 12 core sextant biopsy will miss it again and again. I would hope that the initial MPMRI as part of the AS would kick out a guy like me these days.

WW: Offended? Not I!!!

ZIGGY: I would totally agree, except I cannot get around the FACT that a G6 on biopsy might really be a higher G-level (30% probability).

If I knew for a fact (I'll even take 95% probability) that my biopsy G6 was a REAL G6, then AS would easily be the way to go. We are getting there, but I don't think we are there yet.

Mel

compiler said...
WW: Offended? Not I!!!

ZIGGY: I would totally agree, except I cannot get around the FACT that a G6 on biopsy might really be a higher G-level (30% probability).

If I knew for a fact (I'll even take 95% probability) that my biopsy G6 was a REAL G6, then AS would easily be the way to go. We are getting there, but I don't think we are there yet.

Mel

Mel,
Like I said nothing is 100% in PCa world. Hopefully a more aggressive strain would show up in time during AS. Or for better odds a saturation biopsy could be done like every 3 years or so. I had 45 needles inserted into a 28g prostate. Eight years later I think it's safe to assume that all the Pca I had was discovered pretreatment back in early 2008. You have to remember I still have a working prostate just smaller now.
We're almost there, they're about to waive the checkered flag on AS. The cash cow days are lessening.

Mel,
We are at 99 % already. See the Australian study I posted on Ralph's thread. There was a 1% reoccurrence rate for those on an AS monitoring program that were treated because of progression.
Average time for those that progressed was 7.5 years.
You have a 60-70% chance of the cancer never progressing and a 99% chance of cure if it does progress. This is about a 99.5 % success rate.
Klotz longer studies indicate a 1-2% relative increase in risk in 20 years on an AS program.

No, what I'm saying is that if you are accepted into an AS program, because of your low risk status and are monitored and treated at any signs if progression your risk of death at 20 years is about 1% greater than if you decided to get immediate treatment.

I believe that an MP-MRI has about a 95 or 96% chance of spotting aggressive cancers. Just because an aggressive cancer may be missed on the original staging it doesn't mean that it won't be identified through the monitoring process and treated later with good results.
AS is based on having a small tumor volume. It's large tumors that escape the capsul that kill you. Any tumor that is seen growing during the monitoring process should be treated and 99% of the time the treatment is effective.
Even if the tumor turns out to be a G7 it will in high probability still be contained and treated.

Fixed a typo. Sorry. My OCD is acting up. --PeterDisAbelard

Post Edited By Moderator (PeterDisAbelard.) : 8/17/2014 4:57:18 PM (GMT-6)

Thanks, everyone, for your interest and especially to those of you who gave well-reasoned responses from the heart in the true spirit of this site…to help others.   As I mentioned at the very opening of this thread, and in the spirit of a tread A Yooper started shortly before this one about advanced imaging, we CAN help newcomers by sharing knowledge.   Before proceeding, a few quotes to ponder on sharing knowledge…your comment is welcomed if any of these resonate with you; if, however, the very idea of rationally discussing PC overtreatment fills you with “sound and fury,” as it apparently does for some people, you are most welcomed to post elsewhere (or else I’ll say “thanks,” in advance, again, to the mods for intervening):   Leonardo da Vinci:   “Where there is shouting, there is no true knowledge.” Carlos Castaneda:   “A man of knowledge lives by acting, not by thinking about acting.” Stokely Carmichael:   “The knowledge I have now is not the knowledge I had then.” Margaret Fuller:   “If you have knowledge, let others light their candles in it.”         I was pleased to see that the numbered lines of the original posting raised very little controversy…I'll take that as a positive confirmation.   I’d like to add a few replies to some of the thoughtful comments which have been made in the thread…   medved added a comment about men “electing” to be overtreated (compiler also made a similar comment later).   I did already reply in essence that, indeed, any favorable-risk case is counted amongst the 1-2 million cases of PC overtreatment whether they “elected” treatment, or they were forced at gunpoint to undergo treatment [please forgive my use of hyperbole/exaggeration I this instance, it is merely to make this point].   But medved commented further about the “need” to be treated [his words here] “ not from a (pure) urology point of view, but from a psychology point of view .”   In reply to medved, it may be best to reuse the words of others rather than my own words.   Faina Shtern, CEO of a nonprofit group which has been lobbying Congress to increase federal funding for research into prostate imaging recently addressed medved’s point:   “ Right now we are treating people for anxiety, not cancer .”   AS is not for every case [more discussion on this point later], but it is underutilized today for the pool of men for whom it would be the most appropriate solution. This is shifting with growing awareness, and will continue shifting, but it will not shift overnight...and there will always be a percentage of men who "treat the name (cancer) rather than treat the disease."       RCS, thanks for your value-added comments.  As noted, I did make a correction based on your attentive input.       Purgatory, your suggestion that “ AS should be the only insurance paid option ” for favorable-risk cases might be an idea-before-it’s-time…similar to the Clinton Healthcare plan of 1993 which proposed comprehensive, universal health care for all Americans.   It wasn’t “ready for primetime” in 1993, but twenty years later a large number of American opinions have shifted.   Now, let’s not get political—I’m not!—this is just an illustrative example of another idea, like Purgatory’s, which may not be “ready for primetime” just yet.   Others, like clocknut, also posted later in the thread an opposition to “enforced” AS for favorable-risk patients by drawing upon the parallelism of women’s “right to choose.”   However, to quote from a “New” Prostate Cancer “Infolink” summary of two articles on the economic burden of our existing “management strategies” for favorable-risk PC, “ The high and increasing prevalence of PC detection is placing a significant economic burden on society.   The truth is that such continued costs are not sustainable, and we need to implement better management strategies and more cost-efficient processes to lower the burden on society of PC management.   If we don't find ways to do this, it will just become one more of the many straws that finally break the back of the growing global health care budget .”   In another article, Dr Fisher echoed this perspective (this article was specifically about the treatment of favorable-risk patients by proton beam therapy, which it coined as “ the most expensive medical device in the history of the world ” ).   The article says that Americans devote more of their paychecks to health care than workers in any other country worldwide, yet have a life expectancy that ranks 49th, just behind Portugal. Estimates vary widely, but studies suggest that a large portion of the steady rise in health-care costs can be attributed to new technologies. "If we continue at this pace, health care will be unaffordable for our children."   Purgatory, I do also believe (as I believe you are saying) that something has to change…and if it doesn’t change from the bottoms-up, there will need to be a top-down change which may be as dramatic as you propose.   We’ll see.       MsWorryWart, I recognized your humor immediately…and while I hate explaining jokes, the lobotomy is certainly an alternative to treat the psychological issues mentioned…very good.   While in jest, good point.       toyoung commented [I am paraphrasing] about how new imaging techniques (and other testing) are coming close to eliminating remaining questions about favorable-risk cases.   He also mentioned how his original urologist who diagnosed him (only 2 years ago, with a single core of 3+3 PC) did not recommend these tests for him, and recommended him for surgery.   [I’ll add that his two subsequent biopsies have both been negative, and that he’s on an AS program at MSK.] Understaging is a concern expressed here and related to toyoung’s comment (also commented on by both PeterDisAbelard and compiler) and in other threads, but with this decade’s advancement in imaging techniques, that concern has largely disappeared from contemporary language of up-to-date physicians .   It is well acknowledged that in confirmatory, follow-up biopsies in studies performed a decade or more ago on men with 3+3 PC, about 50% stayed at 3+3 while about 50% were either upstaged or downstaged; roughly 25% each.   Similarly, post-surgical pathology re-confirmed this finding with somewhere around a quarter to a third of 3+3 patients being upstaged, almost exclusively (but not exclusively) to 3+4 (so-called “ adverse pathology ”).   Sample biopsies are NOT perfect in what they find…but the important point is that being upstaged from 3+3 to 3+4 is not likely an issue at all.   The fact is that most of the leading AS programs are now including favorable-risk 3+4 patients in their programs…and they appear to be doing fine.   [I did already mention the additional fact that a very small percentage of cases which initially appear to be low-risk do become life threatening, but these occur at about the same rates whether one has immediate, aggressive treatment OR NOT .]     I’d like to share several other comments on this topic…but rather than use only my words, out of deference to PDA’s treatise on opinions & buses, which I understand to have been directed elsewhere, I’ll call, first, Dr Peter Scardino to the podium.   [Dr Scardino is a cancer surgeon (Department of Surgery Chairman) and researcher at MSK, and author expert in genitourinary and urological cancers, particularly cancer of the prostate.]   Nearly 5-years ago , Dr Scardino wrote that " Understaging/grading can be essentially eliminated with repeat biopsies and MRI and careful monitoring, making AS safe and acceptable ."   The purpose of MRI isn’t to see small cancers, just to see if a big cancer was missed.   And now for another comment from a recognized PC expert, Dr Peter Carroll .   [Dr Carroll (like Dr Scardino, also a surgeon) is an expert in managing urologic cancers at UC-San Francisco.   He is co-director of the UCSF Urologic Cancer Center, and chairman of the Department of Urology.]   Dr Carroll wrote in an editorial:   “ AS patients, if well selected and monitored, do not appear to sacrifice the ability to be effectively treated at a later date.   ... Clinicians and patients considering active surveillance should understand that under grading and under staging could occur and that the disease could be of a higher grade and volume. However, such risks are minimized with the use of a well performed extended pattern prostate biopsy, an essential component of initial and ongoing risk assessment, and other advanced imaging techniques.   Under staging and significant under grading are not the problems today that they were 2 decades ago .”           Also, A Yooper’s earlier thread which included Dr Mark Scholz’s blog comments on MP-MRI imaging as a means to reduce PC overtreatment is a good read .   Scardino, Carroll and Scholz are amongst the very top-of-the-top in prostate cancer care.   They’ve got some of the best and most up-to-date opinions give heed to.         hrpufnstuff commented:   “ I'm surprised to see that the NCCN guidelines for low risk don't mention getting further testing to confirm the low risk diagnosis .”   I would simply say that the NCCN Prostate Cancer Guidelines are comprehensive in that they address the full, broad range of possible PC treatments, but they do not necessarily go into complete depth with each and every one of those treatment modes.   The document is wide, but not deep.   For more on any one of those modes, one would look elsewhere.   For example, on the other end of the spectrum of the disease, you will not find everything one would want to know about ADT in the NCCN Guidelines…only descript ion of when ADT is appropriate treatment.   I hope that this addresses your “ surprise .”       Ziggy9 commented on the psyche of a patient possibly looking back at his own case of possibly being overtreated.   I won’t comment further on this.   “Treatment regret” may exist for some people, but we’re not about looking in the rear view mirror…I’m more about looking forward to the next favorable-risk newcomer coming through the doorway with a look of terror from hearing the “big ‘C’” and not knowing what to do.   We can help that guy.   That guy, I believe, represents the most under-supported subset of men diagnosed with PC today.     And lastly, another of Ziggy9’s comments links directly to another point that bears repeating, again…and again-and-again if necessary.   None of this talk about overtreatment or AS applies to men diagnosed with higher-grade PC.   It simply is not applicable.   It never ceases to amaze me when, despite this clear statement, confusion about this still occasionally pops-up.       edit:  fixed a few typos Post Edited (JackH) : 8/19/2014 1:40:57 PM (GMT-6)

compiler,

I was diagnosed with a single biopsy, 3+4, several cores, not much % positive, and relatively low (under 10) PSA.  I recognize the extraordinarily high probability that I was overtreated.

The notion of "electing" surgery is not a new concept made-up by me.  Perhaps Dr Scholz's words (your doctor) would be more clear than mine (from A Yooper's posting):

"No amount of reasoning seems to ease the instinctual fears generated by this venomous word. Despite warnings about impotence and incontinence—and reassurance that low-grade prostate cancer can be safely monitored— 85% of these low-risk men undergo radical treatment anyway."

But since your comment was preceded with this:  "There are people with high G-scores who CHOOSE...", I think that you missed the final paragraph above which attempted to very, very clearly say that all this talk about overtreatment as absolutely nothing, nothing at all, with "people with high G-scores"...so, your sound and fury is misplaced.

Your question about "show me one person..." speaks volumes to the need to HELP newcomers.  The focus of this thread is totally and completely on low-risk newcomers.  This, my friend, is my only agenda.

Lastly, as I mentioned (and was also just mentioned in another thread), the vast majority of 3+3 upstaging is to 3+4.  Not a life-threatening situation by any means.  Men on AS who end up having a real problem are the same percentage as low risk men who seek immediate treatment yet end up with a real problem...think about that.