"Gleason 6 virtually never spreads to other parts of the body"

The more I learn about prostate cancer the less I know about it. The one thing that seems to remain true is that it is complicated. By that standard this thread seems to be getting somewhere -- we seem to be finding areas of agreement ... but always with serious reservations as well. The discussion remains complicated and I think that nicely fits the subject at hand.

From my point of view there are two reasons why we don't allow the offering of "medical advice" on this forum. The first is that if we allow doctors to do their thing on this forum, before you know it we'll have lawyers doing their thing as well and the site will be litigated to rubble. The other reason -- and this one is just me and I have no idea where Peter the Admin stands -- is that decisions about prostate cancer treatment or non-treatment always involve trade-offs where things that men value greatly are put at risk on either hand and, while I am very comfortable helping men with their decisions it is important to me that it remains their decision and that they not be pushed in that decision, even to correct some perceived imbalance in the industry. (Note that in using the word "perceived" I do not mean to imply that I dispute the existence of those imbalances. OD and OT are very real problems and are part of the confusing mess that men should weigh in making their decisions.)

To show that there are scarcely any statements so obvious that I can't find a counterargument with which I also somewhat agree, I am sometimes troubled by the statement "Education is the key to <some problem>." I agree that education is totally necessary for men to make sensible decisions but... when it is presented as the first step in some sort of Stalinist five-year plan to remake the world, I start wondering if the word "education" always means the same thing. As I see it, education about prostate cancer gives a man more things to think about and generally makes his decision more complicated. The sort of education that is intended to make it easier for men to choose some particular option, however sensible, can cross over the line into "indoctrination" which is to say, pushing, which makes me nervous.

The subject at hand -- whether there are diagnoses of prostate cancer which offer so little risk that perhaps they should be called something else since the word "cancer" is excessively alarming -- is one of those areas where I think education can border on indoctrination. My own position, actually, is mildly, but confusedly, positive. I think that with a low enough PSA and a low enough volume of disease on biopsy, some Gleason 6 cancers could be termed "pre-cancers" to try to keep men from running willy-nilly for treatment. "Pre-cancer" still has the word "cancer" in it and is scary enough, I think, to keep men's attention. I don't much like the term "IDLE neoplasm" because I don't think we have the cellular tumor markers or genetic understanding to use a term so fluffy-bunny reassuring for any Gleason 6 cancer at this time.

But on the other hand the medical community hasn't made any decisions about changing the taxonomy yet and I don't think it is good for discussions on this forum to imply that they have. The idea still remains very controversial among doctors and I, for one, am glad that it is their problem to hash out and not ours.

Post Edited (PeterDisAbelard.) : 8/5/2013 8:42:52 AM (GMT-6)

PDA, you raise the specter of indoctrination vs education. That is indeed a danger if we close our minds to new evidence that doesn't fit with the way we "know" things to be. Festinger discovered in 1957 that we all seek "cognitive consistency" between our internal beliefs and attitudes and new information. When new information conflicts with those beliefs, it creates a state called "cognitive dissonance." We can deal with cognitive dissonance by ignoring or vilifying the new information (or the sources of that information). The alternate path is harder and is less often undertaken -- we can change our model of the world.

The reason I bring this up is because I believe indoctrination is often a maladaptive way of achieving cognitive consistency. After all, what better way is there of making sure everyone holds the same belief and that your rigidly held beliefs will never be challenged? Education, on the other hand, involves openness to information that challenges one's beliefs.

Most men diagnosed with PCa today have the kind that we call low risk or very low risk. We've learned that Active Surveillance has successfully delayed or prevented the potential harms of treatment for over 97% of men using it. Yet 90% of newly diagnosed men are given immediate radical treatment. Doesn't it seem that the indoctrination is in the direction of radical treatment? Doesn't it seem that education must occur in order to offset the obvious imbalance?

Yes, we must be vigilant to assure that AS doesn't become our mantra the way RP has become our mantra, but we are obviously a very very long way off from that occurring.

- Allen

davidg - I was not judging or promoting judging on anyone seeking treatment. In my mind, if someone needs treating invasively, like many of us here had to do, then they should be treated. I am only talking about those diagnoses that really don't justify invasive treatments. There is an alternative treatment, and its called AS, and there are probably many that well qualify for it. And if some oppose AS because of the "fear" factor, that that plays right into the arguments about renaming cancer to non-cancer to eliminate the "fear" factor that some men face. In other medical sitations, patients can't choose to have invasive procedures just because they choose to, if the case justifies it, then it happens, if not, it doesn't. Shouldn't be any different with the types of PC cases that clearly would be best served with AS. There are other ways of overcoming this "fear" factor without re-naming the cancer.  What happened to "education" as being the best way of overcoming fear?  Tricking people out of fear doesn't sound right to me.

david in sc

(edited to fix a few words)

Post Edited (Purgatory) : 8/5/2013 8:32:58 PM (GMT-6)

David, they may qualify for AS medically. They may also qualify for treatment medically. Then there is the whole mental aspect to selecting either choice. In the end, the choice belongs tot he patient.

davidg- I should have been clearer when I said "we must be vigilant to assure that AS doesn't become our mantra the way RP has become our mantra, but we are obviously a very very long way off from that occurring." What I meant is that doctors and patients in general have a knee-jerk reaction: prostate cancer->RP (and RT to a lesser extent). This is what is in part causing the 90% immediate treatment rate. I was addressing PDAs concern about the danger of education becoming indoctrination. I didn't mean the people on this forum -- sorry if I gave that impression.

PDA- I didn't take what you said at all personally. I thought you were pointing out something to be cautious about going forward. As PDAs (not you, I mean the other PDA - Patient Decision Aids ) and shared decision-making become more prevalent, I thought you were making the point that we all must be vigilant that the information be balanced and not doctrinaire.

I'm afraid I'm hopelessly lost to the dark side

Post Edited (Tall Allen) : 8/5/2013 4:57:36 PM (GMT-6)

John, if your oncologist, urologist or surgeon tells you to get treated, it means that you are a viable candidate for treatment. If you then come here and hear how you do not need treatment it creates a wedge. Furthermore, you could tell me that I didn't need treatment but I would tell you that I thought I did given my perspective.

A young man who is a G6 can be a viable candidate for both AS and treatment. A lot of factors are at play.

I definitely believe that there is an orchestrated effort to push for less testing and less treatment here. But that isn't important.

I'm not talking about old guys. in my family old guys go on AS, but if my dad chose to have treatment, and he could find many valid reasons, I'd fully support him and I wouldn't want anyone berating him over his educated and personal decision.

When I was told about cancer we discussed how slow growing it was, how it wouldn't be deadly, and how I could consider AS, radiation or surgery. Most of them told me AS wasn't wise at my age, however.

I was a G6 on first reading, upgraded to a G7 on second and confirmed G7 after surgery.

As was part of my urologists spiel on that horrible first visit post biopsy. He didn't push it recommend it strongly given my age. I considered it for about 5 minutes as a G6 but my focus was really on surgery or radiation. I did not get as detail educated on AS as I would have if I had read the thousands of posts on AS here but it still wouldn't have made a difference for me. It wasn't for me for a number of reasons even though I might have qualified for it. That's my point, just because you qualify for one thing (AS) doesn't mean you also don't qualify for another (treatment).

I agree with you on age and treatment. But many don't. I've seen some here say that AS is perfectly viable for a 40 year. All the experts I spoke with suggested I was too young for it. I've also seen people here suggest a G7 can sometimes qualify you for AS.

I think a lot of the academic discussions that go on here, like the studies they cite, typically completely ignore age. What they discuss as slam dunks are potentially slam dunks for men in their 70s perhaps, not int heir 40s. That distinction is critical when "educating" people in my opinion.

"John, if your oncologist, urologist or surgeon tells you to get treated, it means that you are a viable candidate for treatment. If you then come here and hear how you do not need treatment it creates a wedge"

What type of treatment?, that's part of the problem. As for creating a "wedge" I think that's healthy. Don't take the specialists recommendation at face value. I was advised to have surgery immediately, would have been a mistake for my situation.

David, there are a ton of very well respected oncologists and urologists who would tell you the man you just described is a viable candidate for treatment (specially the younger he is). The cure rates on them are very high and a man with cancer is often times looking for a cure first and foremost.

AS just doesn't appeal to many men. Since they have cancer, denying them the right to treat that cancer as their doctors suggest seems quite extreme to me.

David,

How's this for an example? The man in question has had four biopsies. The first two were negative. The third one found Gleason 6(3+3) cancer in one single core affecting 3-4 percent of the core. His urologist suggested waiting at least three months to see what the PSA does and then to re-biopsy to confirm. Active Surveillance was discussed. A second surgeon has been consulted, he recommended AS. After the three month waiting period (during which the man was very anxious) the PSA was re-tested and a confirmation biopsy was performed with several extra cores taken in the area that had shown cancer before. The PSA was up slightly (to around 8) but the confirmation biopsy came back negative. Despite the negative biopsy the man does not feel comfortable waiting, in part because his father-in-law died of prostate cancer and this has the man's wife rather freaked out. His urologist (a busy surgeon and not shy about recommending surgery) declines to advise one way or the other. The man decides to schedule surgery.

How's that for a low-risk guy making decisions for all the wrong reasons? His wife is freaked out -- what sort of reason is that? One core. Gleason 6. Tiny little bit of cancer. No family history of cancer (his father in law is not a blood relative). A perfect, perfect, perfect candidate for AS.

And who is this AS poster child? It was me if my daughter hadn't been a medical student doing a pathology rotation with a pathologist in Tampa who offered a free second opinion of biopsy number three. I left out the second opinion to make the story more exciting. My second opinion agreed that there was only one positive core and remarked that there was so little cancer present that he almost missed it. But, on the other hand, he scored the little bit he found as Gleason 7(3+4). Which put me in the low end of the low-intermediate risk category. Still a candidate for most AS programs but not the perfect example you were looking for.

So I was your low(ish) risk man with a tiny little dab of cancer and a PSA well below 10 who decided (against the consensus of the advice of the surgeons he consulted) to seek surgery. I made the decision for reasons that now strike me as unserious. After four biopsies I had decided I didn't like the AS lifestyle at all. Too many guys in white coats poking spring-loaded pointy things up my rear and my wife was freaking out. I was looking for the exit and surgery seemed like it.

As it turns out it was the best stupid decision I ever made.

PDA, I guess no one felt the ECE on the right, and there was no reason to do an MRI to look for one.

In retrospect, how do you think your diagnosis could have been improved, or are you resigned to the fact that such flukes will happen, albeit rarely, in spite of best practices?

Peter, you are an exception and guidelines are not written for exceptions. In your case surgery also didn't work so does that mean surgery should not be recommended? I have always recommended either a CDU or a muliparametric MRI or even a saturation biopsy for anyone considering AS. I know my doctor would never recommend AS without a scan and other confirming information like PCA3 and PAP. Also the tumor volume calculator must agree with all the other information.
In every disease a doctor must assess status and treat that status, not treat something that has a low probability of ever occurring. Some doctors are better than others at doing this. One factor that we are ignoring is that in most cancers an oncologist is the one that determines status and recommends treatment. Only in prostate cancer does a surgeon perform this initial function, and we wonder why there are so many patients misdiagnosed of their true status and the reason so many primary treatments fail. Unfortunately most patients rely on their urologist to stage them correctly. We can always assign risks to AS, but we as patients can minimize those risks to near zero with the proper assessment from a qualified specialist. As Dr Srtum states "an MD, medical detective, is imperative in order to determine true status." A biopsy and one psa are usually all the information most use to arrive at a status and as we have seen both of these are highly inaccurate.