Some of you have questioned the negative reception that some of us have to this calculator and I guess I'll try to explain although my explanation will probably miss some minor point of fact and one of the advocate types will be along to scold me momentarily.
First, I should say that nobody has a problem with the calculator as it currently exists. But, in light of what is going on in the industry we are worried about
the calculator as it might soon appear. Currently, it gives two numbers. One for the probability that a biopsy would find Gleason 6(3+3) cancer and one for the probability that it would find a "high grade" cancer (Gleason 7 or above). Because of the clear problem of overtreatment of low grade prostate cancer there is discussion of reclassifying some Gleason 6 results as non-cancers (essentially a negative result of a biopsy and, presumably, to be omitted from future versions of the calculator). Exactly what percentage of Gleason 6 results would be declared as non-cancers is not clear to me. I don' think anyone knows at this time. But, since the goal of the redefinition is to address the problem of overtreatment, and since overtreatment can be shown statistically to be a large problem, I would expect the percentage to be significant.
If that percentage were to be 100% (ie. all
GS6(3+3) neoplasms were declared "non-cancers") then the calculator would report only the second line -- the high grade cancer line -- and my cancer risk going into my third biopsy would have been less than ten percent. And, come to think of it, all four of my biopsies would have been negative since my positive result on the third biopsy was initially Gleason 6(3+3) in one core at 3-4% of the core affected. I was bumped up to GS 7(3+4) on a second opinion but who gets second opinions on a negative biopsy?
So under the new, proposed classification system my Gleason 9 cancer would have been missed on all four of my biopsies. I've seen the studies that show that men are not harmed by waiting, even with aggressive disease and, candidly, I have trouble with them since I am thoroughly convinced that waiting would have (actually may have) harmed me. Just as you gets no bread with one meatball, you gets no science with one datapoint and my experience doesn't prove or disprove anything. But it does make me worry that in the rush to deal with the problem of overtreatment it is proposed to throw a number of high-risk men under the bus without their knowledge or consent. If you imagine this calculator as adjusted by the new classifications, or your biopsies as so adjusted, and ask yourself what your experience would have been like under the new classification quite a number of you who have commented here would have been worse off -- not all but quite a few.
Balanced against that is the unarguable fact of statistically-demonstrable overtreatment. Lots of guys whose cancer would never have bothered them were maimed to find and treat those of us who really needed it. The problem is that, while we can demonstrate their existence with statistics there is no 100% reliable way to say who they are.
If you think of it as an us-vs-them problem then it is an ethical dilemma. But before diagnosis it was all just a bunch of guys each living in the same probability cloud. No ethical dilemma there -- they were all in the same boat. They all had a fairly large risk of having a cancer that sounds more alarming than it is, and a much smaller risk of going on to join me in the Gleason 9 club. But none of them could tell who was who and there was no 100 percent reliable way to find out.
Uncertainty sucks. But there you go. There it is. You gotta deal with it.
My solution is to give the individuals all the information I can, withholding nothing, and let them decide one by one how they will deal with it. I call that education but I am not at all sure that it is the sort of education that is needed if "progress" is to occur. I don't think we have enough certainty yet about
"IDLE" non-cancers or "weird cell" diagnoses to fairly take the decision out of the hands of individuals by redesignating the majority of Gleason 6 results as "negative". I honestly don't know how individuals will react but I am more committed to giving them the choice than I am to progress.
There are a number of other proposals being disussed along with the reclassification -- task forces to gather information about
cancers that are not threatening, repositories of such information, etc, etc, -- and most of those seem like good ideas to me. I don't know enough about
other cancers but for prostate cancer I just don't think the diagnostic state of the art is good enough yet to make changes at this time to what we consider cancer. There is too much real cancer represented in the current crop of guys caught by the admittedly under-selective diagnostic tools. There's a risk. We have to let the guys know about
it and let them deal with it themselves.
Sorry this ran so long. I hope nobody actually read this far. If you did, sorry. I do feel better now...
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg (some inflammation),
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT3 7/26/12
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Leaky but better, Trimix, VEDForum Moderator - Not a Medical Professional
Post Edited (PeterDisAbelard.) : 8/1/2013 11:16:34 AM (GMT-6)