Medical Forum / Diseases and Disorders / Prostate Cancer / April 2008
Fears ramping up
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doofy - 28 Mar 2008 16:47 GMT I've been doing fairly good since, and even before, my diagnosis. It's not the knowns that get me. It's the unknowns. Right now the unknowns are: Has it spread (initial indications are that it has not), and, will my plumbing work after the surgery?
I've been reading Scardino's book, and I think I mostly finished it last night, and it seems the end of the book was concentrating a lot on side effects of the different treatments, and the numbers on potency were not very enthusing. And the off-the-deep-end accounts of incontinence and colostomies is pretty frightening, regardless of the percentages.
So, just sort of expressing some current fears. Don't know that there's anything else to do right now until I can get some imaging.
I felt some buoyancy right after I got the biopsy results, with the uncertainty, and associated morbidity out of the way. Now I'm going through another cycle I guess.
Dwight
alva36@gmail.com - 28 Mar 2008 17:22 GMT > I felt some buoyancy right after I got the biopsy results, with the > uncertainty, and associated morbidity out of the way. Now I'm going > through another cycle I guess. > > Dwight For some of us, the cycles seem never to end.
-Les
Steve Kramer - 28 Mar 2008 18:19 GMT > For some of us, the cycles seem never to end. > > -Les Hmmmmmmmmm. I thought it was Gordy...
Regardless, how are you doing? I don't think you've told us in more than a year how things are going. And back then you were dropping all forms of ADT.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum
alva36@gmail.com - 28 Mar 2008 20:36 GMT > > For some of us, the cycles seem never to end. > [quoted text clipped - 5 lines] > year how things are going. And back then you were dropping all forms of > ADT. Steve-
Gordy was part of a "nom d'plume"(sp) and I've decided to go straight. Well, here goes: ADT stopped in Jan 2007 after 2 years of it and 2 years of undetectables. A March 2007 CT scan of my pelvis found nothing there, but, quite accidentally, picked up the lower portion of my left lung in one of the pics. Sharp eyed docs discovered a nodule on my lung. Follow-up CT scan of my lungs in May 2007 showed "numerous" nodules on both lungs. Wedge resection of lung for biopsy of original nodule in June. Pathologist here in NJ had never seen cells like mine, but assumed it was PCa. Was just about to start chemo, when insurance company offered to pay for second opinion at any one of their 23 Cancer Centers of Excellence around the country.
I chose M.D. Anderson in Houston. They said that it was very rare, but that they'd seen it 2 or 3 times before - metastasized, mutated PCa. But since I was (and am) completely asymptomatic, and there are no studies showing starting chemo sooner, rather than later, would extend my life, the suggestion was to go home and have CT scans every 8 weeks or so and wait for change. Once chemo is started, I'll have 22 to 24 months left. Came home and local med onc decided that even though PSA was still undetectable, she wanted my T level lowered from 27 so started me on Lupron. Next few CT scans showed no change.
Next appointment in Houston was for 6 months hence - February 2008. PSA then was 0.5 and some of the nodules had grown a bit. Still not time for chemo, but gave me another Lupron shot and I to go back in 4 months, June 9 and 10. I just made the plane and hotel reservations about an hour ago..
Now, aren't you sorry you asked?
-Les (no longer Gordy)
Steve Kramer - 28 Mar 2008 21:54 GMT > Next appointment in Houston was for 6 months hence - February 2008. > PSA then was 0.5 and some of the nodules had grown a bit. Still not [quoted text clipped - 3 lines] > > Now, aren't you sorry you asked? No, not at all. I remember Gordy talking about those rare nodules. For some reason I thought it was early 2007. I'm glad Les is doing relatively well.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum
I.P. Freely - 29 Mar 2008 03:41 GMT > Sharp eyed docs discovered a nodule > on my lung. Follow-up CT scan of my lungs in May 2007 showed > "numerous" nodules on both lungs. Wedge resection of lung for biopsy > of original nodule in June. Pathologist here in NJ had never seen > cells like mine, but assumed it was PCa. My colon cancer CTs show long nodules, too. But everyone says they're expected at our age, and that while we might not win the Tour de France with them, we'll never notice them otherwise.
> They said that it was very rare, > but that they'd seen it 2 or 3 times before - metastasized, mutated > PCa. That, or course, may mean any of several things, including: 1. Your docs are smarter than mine. 2. My docs are smarter than yours. 3. Both sets of docs are right, and my nodules are just different from yours.
Sounds like you may know in June. If yours are mutated mets, what does one do about THAT, given that even garden variety mets present treatment dilemmas?
I.P.
alva36@gmail.com - 29 Mar 2008 15:17 GMT > That, or course, may mean any of several things, including: > 1. Your docs are smarter than mine. [quoted text clipped - 7 lines] > > I.P. I.P.- I agree with your 3 points. As to what one does about the mets, I was told it will be a combo of chemo drugs and then wait the 22 to 24 months 'til the end. I am neither macho nor religious, but for some strange reason I seem to be at peace with that. Not that I won't do all I can to stave it off.
-Les
BH - 28 Mar 2008 18:10 GMT Based on my experience, Dwight, I'd say your experiences and feelings are pretty normal.
Best wishes to you!
Burney
>I've been doing fairly good since, and even before, my diagnosis. It's >not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 15 lines] > >Dwight RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.18
I.P. Freely - 29 Mar 2008 03:31 GMT > Based on my experience, Dwight, I'd say your experiences and feelings > are pretty normal. Or not. We've seen a huge variety of reactions among patients at all stages, so I wouldn't advise guys who aren't chronic worriers to accept it. Familiarity can alleviate a great deal of scenario-dependent fear. I play with snakes because I've studied then since childhood, but spiders disgust and scare me because all I know about them is that some can dramatically change our lives, and not for the better. Similarly, I'll race a motorized toy in terrain incomprehensible to most people, but I'm not very comfortable riding to the mall with Caspar Milquetoast. The difference is whether I'm the one in control; I trust myself, but not Caspar. At least with PC, the passenger has a functioning brake pedal.
I.P.
Steve Kramer - 28 Mar 2008 18:14 GMT > I felt some buoyancy right after I got the biopsy results, with the > uncertainty, and associated morbidity out of the way. Now I'm going > through another cycle I guess. I took my wife on a 25th Anniversary cruise rather that go through that cycle. About the tonly time I thought about it was when I was on the treadmill looking out at the ocean.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum
safire - 28 Mar 2008 19:23 GMT > I've been doing fairly good since, and even before, my diagnosis. It's > not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 8 lines] > > So, just sort of expressing some current fears. And the only thing you have to fear, is fear itself, as I am sure you have learned. Getting informed, as you have been doing, will help. Accepting the inevitable, will also help.
Don't know that there's
> anything else to do right now until I can get some imaging. Don't know about that.
> I felt some buoyancy right after I got the biopsy results, with the > uncertainty, and associated morbidity out of the way. Now I'm going > through another cycle I guess. Maybe you should remember your reasonably favorable stats. But if you're really concerned about SEs, as discussed, you need to talk first to someone that doesn't have an interest in whatever treatment you might elect, be certain that treatment is in fact required and that the basis for chosing treatment is correct.
But of course, you're entirely free to let others control your life.
> Dwight Dedman - 28 Mar 2008 22:11 GMT [snip]
> I felt some buoyancy right after I got the biopsy results, with the > uncertainty, and associated morbidity out of the way. Now I'm going > through another cycle I guess. What has always worked for me, although it is a bromide, is to focus on the things you can change and accept the things that you can't. If I were religious, I suppose I would also find some comfort in that.
You might as well accept that you will never get the uncertainty out of the way: the state of medical knowledge and testing is not exact enough for that. All you will get is probabilities... and according to the probabilities, we shouldn't have prostate cancer at all :-)
I probably didn't spend as much time as others advocate researching every last detail and treatment modality. I believe you reach the point of diminishing returns quite quickly and for most people, myself included, location, financial resources, and personal commitments constrain the available choices even further. It is too easy to fall into "analysis paralysis". I ended up with one sheet of paper with a matrix of the pros and cons of the available options, made the decision, and went ahead. I don't think studying it any longer or in more depth would have changed my decision and I am still comfortable with it. It's a craps shoot no matter what you do.
If I could have back all the hours in my life I spent worrying about things that didn't happen, it would extend my life more than any treatment will :-)
 Signature Dedman
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I.P. Freely - 29 Mar 2008 03:56 GMT > I probably didn't spend as much time as others advocate researching every > last detail and treatment modality. I believe you reach the point of > diminishing returns quite quickly That's about the time I quit the research, too. When most "new" links led me back to my own internet footprints, I made some choices and acted with a clear conscience. It's a classic example of the sage advice, "$#!+ or get off the pot".
> If I could have back all the hours in my life I spent worrying about things > that didn't happen, it would extend my life more than any treatment will :-) I laughed out loud at the headlines this week that the rich live 4.5 years longer than the poor. Why? Because people who exercise, eat right, don't smoke, and don't drink too much alcohol live FOURTEEN YEARS longer than their counterparts. And which adds more usable time to our clocks ... a treatment that adds a few months to our calendar but knocks us out for half of every day and impairs the remaining 12 hours, or no such treatment and a high QOL? If that isn't a Hobbs' Choice I don't know what is.
I.P.
I.P. Freely - 29 Mar 2008 03:12 GMT > I've been doing fairly good since, and even before, my diagnosis. It's > not the knowns that get me. It's the unknowns. Right now the unknowns > are: Has it spread (initial indications are that it has not), and, will > my plumbing work after the surgery? If you're normally a worrier, I doubt we can help you; this disease is classic worrier food. Settle down for the ride of your life.
If, however, you're not a chronic worrier ... QUIT IT. The damn thing's going to do whatever the hell it wants to do, mitigated by our efforts to thwart it. It thrusts, we parry, until one of us wins or the referee declares the battle moot and takes us out with a heart attack or meteor hit. If, for example, your plumbing works after treatment, GREAT. If not, we parry with Kegels, drugs, pads, alternate techniques, and/or acceptance. I'll have to wear pads until I die. BFD .. it beats having a flat tire at a bad moment.
> I've been reading Scardino's book, and I think I mostly finished it last > night, and it seems the end of the book was concentrating a lot on side > effects of the different treatments, and the numbers on potency were not > very enthusing. And the off-the-deep-end accounts of incontinence and > colostomies is pretty frightening, regardless of the percentages. So are Alzheimer's, having your dog hit by a car, our nest PSA check, or any of several election possibilities we face, but only one of those is actually worth losing any sleep over. I had no reason to expect incontinence, but here I am. Bummer. So ... what's on TV tonight?
I am very likely to need ADT some day, and the odds it will end my lifestyle of 55 years and counting are north of 0.95. But enough will change by the time I have to take it that I'm holding off further research until it looms much closer.
I.P.
doofy - 29 Mar 2008 06:11 GMT >> I've been doing fairly good since, and even before, my diagnosis. >> It's not the knowns that get me. It's the unknowns. Right now the [quoted text clipped - 5 lines] > > If, however, you're not a chronic worrier ... QUIT IT. LOL.
I am a worrier though.
DoubleOwSeven - 29 Mar 2008 08:29 GMT >I've been doing fairly good since, and even before, my diagnosis. It's >not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 15 lines] > >Dwight Maybe I'm in the minority (no one else is suggesting what I will) but there are anti-anxiety drugs (xanax being an excellent one, fast acting and no side effects of significance) that will get you off the worry train and let you at least have some peace without any feeling of being drugged. This can be an incredibly stress full time (I'm sure I don't need to tell you) and why try to gut it out when there are simple solutions that let you get on with things.
Steve Kramer - 29 Mar 2008 12:55 GMT > Maybe I'm in the minority (no one else is suggesting what I will) but > there are anti-anxiety drugs (xanax being an excellent one, fast [quoted text clipped - 3 lines] > sure I don't need to tell you) and why try to gut it out when there > are simple solutions that let you get on with things. I used to be in a job where I worried all the time. Took home the job all the time; as well as the cell phone, pager, and knowledge that I would be called in the middle of the night at least once a week. I worried about most of the major projects on which I worked.
However, I was extremely successful in the end and seemed to anticipate many permutations that others seemed to miss. I often wondered if God gave me "worry" like he gave us "pain"; if it let's us know there is something else out there that we need to consider. For that reason, I never sought out meds; however, I probably should have sought out advice regarding meds and whether my worry for not worrying was accurate.
DoubleOwSeven - 29 Mar 2008 20:06 GMT >> Maybe I'm in the minority (no one else is suggesting what I will) but >> there are anti-anxiety drugs (xanax being an excellent one, fast [quoted text clipped - 15 lines] >meds; however, I probably should have sought out advice regarding meds and >whether my worry for not worrying was accurate. To me that's a different kind of worry. My job would undoubtedly make some people very anxious but it does not have the effect on me. Yet some much simpler things in my personal life can make me pretty anxious and the whole PCa trip was a nightmare of anxiety. I don't need meds to deal with millions of dollars and public safety issues but I definitely needed meds with the PCa.
doofy - 29 Mar 2008 15:45 GMT >>I've been doing fairly good since, and even before, my diagnosis. It's >>not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 23 lines] > sure I don't need to tell you) and why try to gut it out when there > are simple solutions that let you get on with things. Actually, I went out to dinner, talked about some of this stuff with my date, sunk a little bit more into the worry, then spent the next 2 hours walking with her around downtown Palo Alto, and that seemed to kick me out of the funk to a large degree.
DoubleOwSeven - 29 Mar 2008 20:09 GMT >>>I've been doing fairly good since, and even before, my diagnosis. It's >>>not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 28 lines] >walking with her around downtown Palo Alto, and that seemed to kick me >out of the funk to a large degree. You may not be having significant anxiety then. It's not a funk, it's a stomach churning, mind spinning, can't sit still, can't stop pacing, can't sleep because my mind won't stop going a million miles an hour nightmare.
doofy - 30 Mar 2008 01:43 GMT >>>>I've been doing fairly good since, and even before, my diagnosis. It's >>>>not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 33 lines] > can't sleep because my mind won't stop going a million miles an hour > nightmare. You're right. I've had anxiety attacks/issues regarding other things. Not this. Not yet anyway. I'm trying to face it squarely. It's just some of the unknown stuff right now. And I'm over-reacting to some things, since in know my own probabilities are low right now.
Leonard Evens - 30 Mar 2008 03:33 GMT > I've been doing fairly good since, and even before, my diagnosis. It's > not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 15 lines] > > Dwight I've spent so much time over the years owrrying about things, almost all of which didn't happen, that I've tried to analyze the psychology behind it, at least as it seems to work for me. Clearly, it doesn't do any good to worry about something before it happens, because it almost never helps you do anything about it in advance. I think, in my case, there are two reasons my inner self wants to do it. The first is the mistaken belief that by thinking about it I can somehow prevent it from happening. That is clearly irrational. The other is a belief that I can prepare myself for it in advance, what every "it" is. That is a bit more rational, but on further thought I decided it also doesn't amke sense. You can't prepare yourself for the horiible things that miight happen to you, and trying just makes you unhappy. There will be plenty of time to adjust after it happens, if indeed it does happen.
Of course I have trouble actually making my emotions conform to this wisdom, but it does help.
Try thinking about other things that you can do something about.
Dedman - 30 Mar 2008 11:54 GMT [snip]
> I've spent so much time over the years owrrying about things, almost all > of which didn't happen, that I've tried to analyze the psychology behind [quoted text clipped - 9 lines] > happen to you, and trying just makes you unhappy. There will be plenty > of time to adjust after it happens, if indeed it does happen. I'm surprised to hear you say this. There is a whole discipline of Risk Analysis/Risk Management for making decisions in the face of uncertainty using Bayesean Probability Theory which I have often thought could be applied to the decisions one has to make when facing Prostate Cancer. I have spent some time myself playing with models and often thought of contacting you to get your ideas because of your background. Now you tell us that you just worry about it like everyone else ;-) Truly the shoemaker's children have no shoes :-)
I too have given a lot of thought to "worry" and here is how I see it. Humans are apparently unique in their ability to model the future and therefore be able take steps to alter it. That has conferred on us an evolutionary advantage. In that sense worry is a good thing and part of the survival instinct. It is only when we get "stuck in a loop" that worry paralyses us: turning the same thing over and over in our minds and always coming up with the same answer. At that point is is not worry but obsession. To me, obsession is thinking about the same thing over and over and getting the same result. When I find myself worrying about something I have worried about before, I try to stop and ask myself if I have any new information since the last time I worried about it. If not, why do I think I am going to arrive at a different outcome this time? Then I can deflect my "worry" into problem solving: what new information would make a difference and how can I obtain it. (That is one of the techniques of Risk Analysis ie "paying for additional information").
I find that this technique strikes a balance between "I'll just worry about it tomorrow" irresponsibility and denial and "deer in the headlights" paralysis. As you point out, this is easier to say than to do, but at least it's a plan. And I have found that with practice it becomes easier to do.
Just my two cents. Sorry if my philosophizing offends anyone.
 Signature Dedman
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orchids58 - 30 Mar 2008 16:25 GMT > [snip] > [quoted text clipped - 49 lines] > -- > Posted via a free Usenet account fromhttp://www.teranews.com Hi Dedman, I like the way you wrote this, and what you said in it. Thank you for taking the time to do this. Wife of PSA Guy, Charlotte
I.P. Freely - 30 Mar 2008 17:41 GMT > There is a whole discipline of Risk > Analysis/Risk Management for making decisions in the face of uncertainty > using Bayesean Probability Theory which I have often thought could be applied > to the decisions one has to make when facing Prostate Cancer. snip
> When I find myself worrying about something I have worried > about before, I try to stop and ask myself if I have any new information [quoted text clipped - 5 lines] > > I find that this technique strikes a balance I've studied and used Bayes' theories, including risk analysis, in school and at work and in some personal decisions more amenable to quantification. But I wasn't willing to apply them to my very life and the quality thereof given the broad and conflicting data we have to work with in this application. I relied instead on paying (with manhours and book purchases) for additional information; as long as my investment was increasing my useful knowledge base, I kept investing. When new data and professional opinions became sparse, I stopped investing and acted.
I suspect issues like survival and QOL are so unquantifiable that, at least regarding follow-up PC treatment selection, statistical analysis provides primarily peace of mind for geeks (no offense; I are one) rather than valid decision criteria. i.e., while mathematical analysis may provide some decimal points, they are but one piece of a large puzzle after our first tx fails. Besides, if I am going to ignore -- and I did -- "little" study differences like a 15% advantage of this vs that, of what use is a 5% advantage in the bottom line?
How does one meaningfully quantify, even broadly, such things as grandkids, pads, erections, energy level, personality changes, and anal itching? And even if we could, consider the huge differences among "expert" sources in their likelihoods, mitigation efficacies, and individual impacts. Sure, we can make assumptions, assign numbers going in, crank out still more numbers, and examine decimal points, but to what end? When ya measures with a laser, marks with spray paint, and cuts with an axe, all those secondary probability decimal points are lost with the chips and only the first decimal point means anything at all.
Not to mention false or changed assumptions. My pre- and post-RP appraisals of the impact of various side effects are significantly different, and various results have fallen out in the one to two, maybe even three sigma, ranges. My pad count is way over expectations but my PSA, and thus survival expectations, are thus far better than anticipated.
The primary place I used statistics was in calculating the likelihood of the ADT SEs highest on my own prioritized $#!+ list, the SEs whose statistical risks (probability times cost) I'm not willing to take until medical necessity, rather than Just In Case shotgunning, mandates them. Unfortunately, the individual SEs' likelihoods are based largely on non-peer-reviewed "data", but ya gotta admit the man wraps his theories in such a great-looking *package* that it's hard to overlook his numbers, especially when studies, other professional opinions, and our own little enclave here generally concur appreciably.
I've used quantitative analysis as major inputs when choosing a car or a job, but those are reversible. I've never heard of reversing a primary PC tx.
HEY ... how come we've never mentioned prostate transplants? Could it be that the damned thing is just not that necessary once we've whelped about as much as we're going to?
I.P.
Leonard Evens - 30 Mar 2008 18:25 GMT .
> HEY ... how come we've never mentioned prostate transplants? Could it be > that the damned thing is just not that necessary once we've whelped > about as much as we're going to? First, there are various risks associated with transplants, and the drugs needed to suppress rejection have serious side effects. But a more basic question is "why bother?" It is possible that a prostate might be implanted in such a way to improve continence, but that seems rather unlikely to me. In any case, there are already surgical techniques to do that. It might also restore some ejaculation, but that hardly seems worth the effort. Since the new prostate might develop BPH or prostate cancer itself, it seems better not to replace it.
Erections are controlled by nerves outside the prostate, and those nerves can and often are transplanted.
Given all the disadvantages of having a prostate, one might better argue for routinely removing it from men past the age when they may want to produce offspring, at least for men with a high likelihood of getting prostate cancer. Even fertility could be preserved without a prostate by storing sperm.
> I.P. I.P. Freely - 30 Mar 2008 19:00 GMT > . >> [quoted text clipped - 8 lines] > prostate cancer. Even fertility could be preserved without a prostate > by storing sperm. Well, it *was* a rhetorical question, in line with Walsh's characterization of the prostate as our least necessary and most problematic organ, and Churchill's characterization of it with, "Never in the field of human misery was so much owed by so many to such a useless part". ;-)
On a more serious note, in obtaining Churchill's REAL quote verbatim, I ran across a television production company poll which showed that 23% of Brits believe Sir Winston was a myth (but a majority believe Sherlock Holmes was real). I guess the U.S. is not alone in its level of public ignorance.
I.P.
Dedman - 30 Mar 2008 21:03 GMT [snip]
> I've studied and used Bayes' theories, including risk analysis, in > school and at work and in some personal decisions more amenable to [quoted text clipped - 29 lines] > even three sigma, ranges. My pad count is way over expectations but my > PSA, and thus survival expectations, are thus far better than anticipated. Of course you are right that the Quality of Life (QOL) costs are not intuitively quantifiable in the same sense that the economic costs are. But I believe one could do better than just winging it. But before addressing that, let me answer the question of why bother.
Just as we are often fooled by our senses, I think we can be fooled by our emotions: we can make choices which are inconsistent with our actual priorities because of what we _wish_ were true. The object of a decision analysis for say, the initial treatment, would not be to make the decision per se but to check the consistency of our assumptions and explore which are the key variables. The best analogy I can think of is the mathematical model in a Business Plan. It is well known that you can make the result come out pretty much any way you want by choosing your assumptions. I know I have done so :-). But the real value of the model is to see how the outcome changes as you change the assumptions; in identifying those variables and assumptions which change the outcome by 100% when they change by 10% and the other way around. The structure of the model itself, if done correctly, helps you to understand the fundamental dynamics of the business and can be agreed upon by everyone even if the specific assumptions are subjective.
Some examples: how would my treatment selection change if my Gleason score were off by 1 (and what is the probability of that?); what is the probability that one more biopsy needle would have found a worse sample?; what is the probability that the cancer has already escaped the prostate?; etc., etc. You implicitly evaluate these probabilities when you you make a treatment choice anyway. Why not make the evaluations explicit and see how your choice would change if you varied the probabilities? And are your probability estimates reasonable or driven by emotion? (Example: people are usually more afraid of dying in an airplane crash than in a car crash even though the later is orders of magnitude more likely.)
That's the first part of a decision analysis, estimating the contingent probabilities, and there are good data out there to help you get a handle on it. The other part is the payoffs: years of survival and the QOL of that survival. I don't know how to do this but I have some ideas. The hint that it can be done, or at least approximated, can be found in the frequently heard comment that "I'd rather have three good years than four bad ones". It should also be possible to factor in the "time value of life" (to coin a phrase) similar to the "time value of money": another year now is probably worth more than another year ten years from now.
These payoffs will be different for each individual and different for the same individual at different points in his life. One approach for developing an individualized "payoff matrix" might be a series of preferences. For example: "Would you rather live with incontinence or impotence?"; "Would you accept a 5% risk of incontinence to achieve a zero risk of impotence?"; "Would you exchange a life span shortened by three years but additional unimpaired year now for a five year life span where you were tired all the time?". These are only examples meant to illustrate the technique and would certainly not be the final questions. An analogy here might be the many different "pop psychology" personality tests which help you gain insight into your character (although they are frequently misused and assumed to have a greater validity than they do).
Thus I see the decision tree and it's contingent probabilities to be about the same for everyone and open to collaborative development while the payoffs in terms of length and Quality of Life would be subjective and different for every individual _but_ consistent for that individual. The object would be to help understand the different variables and to expose any inconsistencies in the logic, not to dictate the decision or reduce the unquantifiable to three decimal places.
Of course such a model would not eliminate "worry" which, I guess, was the original issue, but I think it would be helpful in choosing the initial treatment and any follow up treatments as well as evaluating whether or not it would pay get additional information, eg biopsies, scans, etc. It also might be a good way of thinking through potential side effects.
Anyway, I have rambled on too long about this already.
 Signature Dedman
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I.P. Freely - 30 Mar 2008 22:02 GMT > The object of a decision > analysis for say, the initial treatment, would not be to make the decision > per se but to check the consistency of our assumptions and explore which are > the key variables. To that end, the various predictive PC nomograms helped quantify and support my research. It was interesting and useful to vary my treatment options and see their expected impact on my prognoses. (It even helped me evaluate the models' expected impact on my prognoses of my doctor's three-year delay in noting my rising PSA, to help me file a complaint against him.)
> The best analogy I can think of is the mathematical model > the real value of the model is to see how the outcome [quoted text clipped - 3 lines] > helps you to understand the fundamental dynamics of the business and can be > agreed upon by everyone even if the specific assumptions are subjective. Thanks for bringing back fond memories of the second-best job I've ever had. I can well appreciate the value of math models, having helped develop the free world's largest mathematical model (Boeing's simulation of the Apollo launch system and its lunar missions) on the free world's largest computer system (a monster comprising four state-of-the-art analog computers embedded into five unified state-of-the-art mainframes).
Resistance was futile. ;-)
Fortunately, our assumptions were the antithesis of "subjective", rendering rocket science a piker compared to choosing PC treatments.
> another year now is probably > worth more than another year ten years from now. > These payoffs will be different for each individual and different for the > same individual at different points in his life. Absolutely, as loooooong, insightful, and sometimes heated discussions here have attested. One man's grandkids is another's windsurfing. (Fortunately, both apparently won those gambles.)
> One approach for developing > an individualized "payoff matrix" might be a series of preferences. I posted here and presented to my doctors the results of mine years ago, to a number of raised eyebrows. My uro admitted that the old homily that "men think with their dicks" often applies to men evaluating initial PC treatments, in that some will not even consider any tx that could hurt their continence, let alone their potence.
I.P.
Leonard Evens - 30 Mar 2008 18:12 GMT > [snip] > [quoted text clipped - 20 lines] > worry about it like everyone else ;-) Truly the shoemaker's children have no > shoes :-) I think that a rational analysis of risks and benefits can be enormously helpful when trying to decide what to do. I haven't gone as far as using formal models---it is best to master such techniques when you aren't emotionally involved in the decision---but I did do some order of magnitude calculations when decdiding what to do after I was diagnosed with proste cancer with a Gleason 7=3+4. I used the Partin tables to assess risks, but kept in mind that they would only tell me about likely results from post-surgical pathology. I understood there was a sizable risk of impotence---which very likely could be partially ameliorated--- and a pretty small risk of serious incontinence, The thing that was most significant to me was that for a Gleason 7 cancer, my chances of developing metastatic cancer within 5 to 10 years was unacceptably high. I was not able to estimate those chances, but I decided for me personally even if the risk was as high as 20 percent---and from my reading I thought it was higher than that---I was willing to put up with the risks from treatment in order to improve my chances of avoiding metastatic prostate cancer. Had my life expectancy been less or if I had judged the risk of metastatic prostate cancer to be very low, say 1 or 2 percent, I would probably have opted for another choice such as expectant management.
So, you see that, probably because of my background, I did try to think semi-quantitatively. Of course, in such a situation, one is never sure of ones underlying intentions. Research in brain science appears to show that decisions aren't made at the rational level, but at best may help guide the intuitive "gut" feeling process developed through evolution. Often rational analysis, incompletely done, can just be a mask for an emotional choice. Sometimes people like me can overcome that. For example, I recently decided whom to vote for, when I found the choices equally attractive, by flipping a coin. Decision theory shows that such an approach is rational when two choices are quantitatively the same.
On the other hand, the import of my previous remarks was that in circumstances where there is little or nothing to decide, at least for the present, continuing to worry about what might happen and what you would do if it did, is counterproductive, and should be avoided to the extent that one can.
Thus, while I'm aware that my next PSA test may show recurrence and that I may need to face metastatic prostate cancer, I don't worry much about that or try to think ahead to see how I would deal with it. I must admit getting tense while I wait for my PSA test result each year. That is also foolish since the chances of recurrence in any one year are pretty small in my case. I should just treat it as a routine test with no special significance except that I might be unpleasantly surprised, as could happen with any other routine test I take. But, I do find that hard to do for the week or so before I get the PSA test result.
> I too have given a lot of thought to "worry" and here is how I see it. > Humans are apparently unique in their ability to model the future and [quoted text clipped - 18 lines] > > Just my two cents. Sorry if my philosophizing offends anyone. I.P. Freely - 30 Mar 2008 19:11 GMT > The thing that was > most significant to me was that for a Gleason 7 cancer, my chances of [quoted text clipped - 7 lines] > or 2 percent, I would probably have opted for another choice such as > expectant management. Sometimes life hands us distasteful but easily resolved dilemmas. This was one of them.
> I recently decided whom to vote for, when I found > the choices equally attractive, by flipping a coin. Where did you find a three-sided coin? ;-) (That's one decision I don't have to make this time around; I may as well flip a marble. But if I were locked into your side of the aisle, I'd have a really tough decision to make.)
I.P.
Dedman - 30 Mar 2008 21:05 GMT [snip]
Leonard, I believe I have addressed your issues in a lengthy reply to Mr. Freely and don't want to repeat it here. Please see that response and comment if you wish.
 Signature Dedman
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Califchief - 30 Mar 2008 08:00 GMT Steve typed on the keyboard:
> I used to be in a job where I worried all the time. Took home the > job all the time; as well as the cell phone, pager, and knowledge > that I would be called in the middle of the night at least once a > week. I worried about most of the major projects on which I worked. After 23 years with the city, I retired on disability in 1988, thus cell phones were not an option during my working years.
And I never "took a job (or worry) home."
However I always knew that once or twice a week, the pager would wake me between 2am and 5am --- usually around 3:00 or 4:00 after the bars closed and a smoldering cigarette a waitress tossed into the trash flared up and started a blaze. I learned at a recent meeting that there hasn't been one of those in a long, long time
We also had the eco-nazis groups torching construction sites and SUV dealers. They're still around.
___ Blue Wave/QWK v2.12
Califchief - 31 Mar 2008 03:00 GMT > It might also restore some ejaculation, but that hardly seems > worth the effort. Since the new prostate might develop BPH or > prostate cancer itself, it seems better not to replace it. Could the same be true with a lung transplant?
Since the "new" lung might develop cancer, why bother?
Because it would be a life-saving transplant whereas a prostate transplant is not considered "life-saving."
___ Blue Wave/QWK v2.12
Califchief - 31 Mar 2008 03:00 GMT I.P. expounded with these words:
> HEY ... how come we've never mentioned prostate transplants? > Could it be that the damned thing is just not that necessary > once we've whelped about as much as we're going to? NOT A MEDICAL NECESSITY (SIGNED) YOUR INSURANCE COMPANY
At any age, it really is not a necessity to substain life, unlike a heart or lung or kidney. It's one of those "nice to have" organs, like a woman's clit (the only organ in the human body whose __ONLY__ function is pleasure).
Of our 5 (6 if you believe in ESP) senses, vision is considered the most important/vital. Eye transplants, like the other organs mentioned above, are covered.
Joe N.
___ Blue Wave/QWK v2.12
Califchief - 31 Mar 2008 03:00 GMT I.P. again tapped the keyboard to produce this:
> 23% of Brits believe Sir Winston was a myth (but a majority believe > Sherlock Holmes was real). I guess the U.S. is not alone in its level > of public ignorance. If you are able to ever come across it, you'll split a gut viewing a BBS broadcast by the straight-laced UK equivalent of Edward R. Morrow. (It's in B&W, so you can guess at its vintage.)
He aired a "spaghetti harvest." <g> It showed people harvesting spaghetti from trees, drying it in the sun, then cooking and dining from their "harvest." Supposingly it was filmed in a tiny republic not as well know as Italy.
"Ever wonder why spaghetti is of equal length. These farmers have produced that feature through centuries of using the finest cross-pollenation and other techniques."
And half or more of the UK believe that April 1st broadcast. <VBG>
Once a year, every year, I gather a small group of (different) friends or new people from church and play my recording. Folks who have emigrated from England are the ones who laugh the most/loudest.
___ Blue Wave/QWK v2.12
Lud - 02 Apr 2008 23:08 GMT > I've been doing fairly good since, and even before, my diagnosis. It's > not the knowns that get me. It's the unknowns. Right now the unknowns [quoted text clipped - 15 lines] > > Dwight There is only one important issue - find the best practitioner for YOU. As Dr Strum says; the graduate with the highest grades and the lowest grade are both called doctor. Most doctor quote the best practitioners stats, the important stats are the doctor you are considering - the results are dramatically different between doctors.
And a good dose of luck helps.
Lud
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