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Medical Forum / Diseases and Disorders / Prostate Cancer / December 2007Research, study, read, learn all you can and.....go crazy?
I've learned a lot from the information posted from this group but I'm wondering, how much of this can I (or anyone) take? Is it really healthy to constantly question every possible course of action one might embark on, or should I say commit to, leaving one with the sense that there are so many options and new treatments, that I may very well be making a wrong choice? I've finally come to grips with my condition and have made a decision, but as I read the posts every day, I just get filled with more anxiety over my future. Are we really doing each other a favor by constantly scrutinizing every last detail of every treatment and the consequences.......or are we creating unneccessary anxiety in our lives, as we are ultimately powerless to really affect the outcome. Intellectually, I know the more knowledge I have, the more intelligently I can make a decision....but pca simply does NOT fit into this category...the more I learn, the LESS confident I feel. I took one of the Steve's advice and ordered A Primer on Prostate Cancer by Stephen Strum and it's like reading a horror story.... Why do I listen to my intellect when my entire (symptom-less) body say "no" to my upcoming RP? I've always trusted my inner feelings and instincts to get me this far and now I have to stifle those trusted feelings and do something totally counter to the way my emotions and body feels. This is like forcing yourself to walk off a cliff, while saying don't worry, it's good for you, it'll be worth it. Late night rambling, sorry.......I know this doesn't help anybody :( > I've learned a lot from the information posted from this group but > I'm wondering, how much of this can I (or anyone) take? There is no final, definitive, answer to the issues involved in this our disease. Reason: it has so many aspects that no one individual (I suspect) understands it all, notwithstanding what some here might claim. All any of us can do is learn as much as we are able and make a decision. Then live with it. Regrettably, that's just the way it is. We must cope as best we can. Regards, Steve J "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data." -- Charles L. "Snuffy" Myers, MD Medical oncologist. PCa survivor. Hi Skeptic, "I've learned a lot from the information posted from this group but I'm wondering, how much of this can I (or anyone) take?" I guess we take all that we want, as much as we need, and as much as it helps. You and I came to this group and posted questions to a very difficult conundrum, I think we got answers that are both helpful and yet my still be confusing. Alas our choice is ours to make and the consequences are ours to shoulder. Some times, life is like a baseball game. We come up to the plate, look the pitcher in the eyes and take the best appraisal at what pitch will be thrown. We size up the ball as best we can and take our swing or decide to wait for a better pitch. We do the best we can, a bit of luck and a good measure of skill will help us decide what to do. It seems that you have done your homework and have made your decision on how you will act. Once you have decided and are waiting for the big day, enjoy the fact that you took your best swing and enjoy the game as best you can. I hope that you can get to do some of the enjoyments in your life while you await your procedure. You will be surprised at how fast you will be back in the swing of things and enjoy doing them again.Today I went cross country skiing and spent a wonderful day out side, for me it is 2 months from my robotic operation. Shortly you will be back into your active lifestyle again. Your last line if your post "Late night rambling, sorry.......I know this doesn't help anybody :( " is about the same as mine except that you may be mistaken. Each of our ramblings allows our own selves and others a window to our thoughts and that may be a good thing. Your ramblings provide a valuable insight and an opportunity to reflect on our own predicament and our passage through it. Peter > I've learned a lot from the information posted from this group but I'm > wondering, how much of this [quoted text clipped - 23 lines] > worry, it's good for you, it'll be worth it. > Late night rambling, sorry.......I know this doesn't help anybody :( [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Hi Peter, I pretty much agree with what's been said here. Read all you can from reputable sources. By that I mean peer-reviewed medical literature, university medical center web sites (Mayo clinic is very good) and such. Also, keep in mind that many Medical Centers have a ton of $$$ invested in particular technologies and will have a tendency to emphasize utilization of that particular treatment method. Get several medical opinions but be aware of the Specialists' Bias. My head was spinning after a few months but one thing came through loud and clear and that is that that there is little consensus on many issues in this field which underscores the need for the patient to be that much more informed. This really demands the expertise of a Biostatistician more than an M.D. once you've had your "numbers" revealed. Of perhaps most importance,your treatment path (once you've educated yourself factually) will involve a large amount of personal risk/reward calculation regarding the various treatments and their sequellae. Then make your decision and stick to it unless confronted by "compelling" evidence to "recalibrate". In my case one of the most difficult parts was holding my ground despite some very contemptible and shrill feedback and advice from a few people on this group, particularly one "Beverly" who was beside herself at my personal decision and demanded I explain myself to her satisfaction. I haven't "seen" her here lately so I assume she's "away" getting the mental health treatment she so desparately seems to require. Just yesterday I received an email from someone who had had a RP and was apparently on a mission to have others follow his path. Of course he included the obligatory chilling and rambling account of what "may" happen if I don't follow his advice. His "advice" consisted of anecdotal information (if you have ever taken a course in statistics one of the first things you are taught is to ignore "anecdotal evidence") which was as nonsensical as could be, but what came across was a need for his own "self-justification" for taking the path he did. Bottom line, do your homework (including advice from here and other sources) and make your personal risk/reward calculation. You will probably find that the spinning will diminish or stop altogether inasmuch as the "cognitive dissonance" will have been resolved. Then "hold your ground" when you get the inevitable self-centered "support" which will ensue from some keyboards. Stay with your decision unless you find "compelling" reasons to reconsider. Best of luck, Sy > Hi Skeptic, > "I've learned a lot from the information posted from this group but I'm [quoted text clipped - 57 lines] > > worry, it's good for you, it'll be worth it. > > Late night rambling, sorry.......I know this doesn't help anybody :( Although Sy demonstrates erudition with his "sequellae", his "cognitive dissonance", and his articulate prose, he blows it by demonstrating *exactly* the flaming ad hominem Peter has legitimately expressed concern about: > In my case one of the most difficult parts was holding my ground > despite some very contemptible and shrill feedback and advice from a [quoted text clipped - 3 lines] > "away" getting the mental health treatment she so desparately (sic) > seems to require. We all know Beverley's biases and her many beliefs that deny huge bodies of evidence, but Sy seems incapable of understanding that we attack her *beliefs* and her resulting *statements* with facts, not *her* with baseless ad hominem, as he so often does even with people earnestly responding to his requests for support. That's why so many of us long ago PLONKED him and a couple of others with the same penchant. Sy didn't "hold his ground"; rather, he buried himself in it. I.P. [[ This message was both posted and mailed: see the "To," "Cc," and "Newsgroups" headers for details. ]] Some rendition of eschewing "ad hominums", I.P.. I'm sure Beverly would just love your remarks. Sy > Although Sy demonstrates erudition with his "sequellae", his "cognitive > dissonance", and his articulate prose, he blows it by demonstrating [quoted text clipped - 18 lines] > > I.P. >I've never said this before to anyone, but if readint these posts is your problem, quit reading them. Wait until after the surgery and report back then of your success< Steve, I'm actually going to take your advice. I've learned what I need for now, and will go forth and deal with my first step and stay off the group to reduce my anxiety.....until after my RP. I will report back. Thank you all. Until then, a Merry Christmas to all and to all a good night. > Steve, I'm actually going to take your advice. I've learned what I > need for now, and will go forth and deal with my first step and stay > off the group to reduce my anxiety.....until after my RP. > I will report back. > Thank you all. > Until then, a Merry Christmas to all and to all a good night. Great, Skeptic. I wish you and yours a very Merry Christmas and Happy New Year and hope you don't see this until it's almost Valentine's Day. :-) > I.P., I'm sure Beverly would just love your remarks. [> I.P. Freely wrote: >> We all know Beverley's biases and her many beliefs that deny huge bodies >> of evidence, but Sy seems incapable of understanding that we attack her [quoted text clipped - 3 lines] >> ago PLONKED him and a couple of others with the same penchant. Sy didn't >> "hold his ground"; rather, he buried himself in it.] Probably so. If I thought Beverly would feel (significantly) insulted I wouldn't have written it. She's mature enough not to take this crap so personally or seriously or to bear grudges. I.P. I.P., So, I take it that you know Beverly personally? Otherwise, it's the height of hubris to assume she wouldn't take it seriously. I thought what you said was quite insulting whereas you believe it was not "significantly" insulting. Whadda guy. Sy > > I.P., I'm sure Beverly would just love your remarks. > [quoted text clipped - 13 lines] > > I.P. > Is it really healthy to constantly question every possible course of > action one might embark on, or should I say commit to, leaving one > with the sense that there are so many options and new treatments, that > I may very well be making a wrong choice? Depends on the individual. More information sets some people free by enabling them to make a decision they believe in, while others are simply panicked or confused by information because they can't or won't process it. I would bet you a seed or a stitch that those groups could be clearly distinguished from one another by brain MRIs just as political orientation is. They're (often) WIRED differently, not just raised differently. > I've finally come to grips with my condition and have made a decision, > but as I read the posts every day, I just get filled with more anxiety > over my future. Other grow LESS anxious as each new substantiated kernel of knowledge blacks out a few squares and/or highlights a few other squares in their chess board. Different blokes, different strokes. > Are we really doing each other a favor by constantly scrutinizing > every last detail of every treatment and the consequences.......or are > we creating unneccessary anxiety in our lives, as we are ultimately > powerless to really affect the outcome. If by "outcome" you mean death, I've got a tip for you: we're all going to die. But life, by definition, is the journey, not the destination, and much of the journey is under our control. Many of us, probably almost all, have affected that journey by our treatment choices, just as our choices have affected our journeys since we began tying our own shoes. Whether we do another a favor by providing data and opinions is up to his psychological makeup, which is often founded in his physical makeup, according to the MRI studies. > Intellectually, I know the more knowledge I have, the more > intelligently I can make a decision....but pca simply does NOT fit > into this category. I disagree. Certainly that metaphorical chess board will never have 63 squares blacked out and one glowing neon bright all by itself and with its own sound track, but surely as ever more squares are ruled out (e.g., SRT w/known mets) and more are highlighted (e.g., ADT w/painful mets), choices become easier. > the more I learn, the LESS confident I feel. > I took one of the Steve's advice and ordered A Primer on Prostate > Cancer by Stephen Strum and it's like reading a horror story.... > Why do I listen to my intellect when my entire (symptom-less) body say > "no" to my upcoming RP? We're back to individual makeup. > I've always trusted my inner feelings and instincts to get me this far > and now I have to stifle those trusted feelings and do something > totally counter to the way my emotions and body feels. Thus many of the differences between Everest climbers (who bust their very guts for many weeks for one minute at the peak) and dancers (who live for the moment), liberals and conservatives, gadabouts and loners, hedonists and altruists, cats and dogs. If we were all alike, there would be no forces for change. Realize, too, that even complex decisions by pragmatic people are often based on feelings, but that those feelings in turn are founded in hard factual knowledge. > This is like forcing yourself to walk off a cliff, while saying don't > worry, it's good for you, it'll be worth it. An RP is not a cliff. It's a curb. It's you, not your cancer, that is your biggest near-term threat. Whether you can fix that only your psychiatrist or psychologist may know. It sounds to me that you might really benefit from talking to one. After all, it's just another kind of doctor; no shame in consulting one and it may help significantly. I.P. > I've learned a lot from the information posted from this group but I'm > wondering, how much of this [quoted text clipped - 3 lines] > with the sense that there are so many options and new treatments, that > I may very well be making a wrong choice? At the risk of sounding like a broken record, the answer is "yes, research your options and pick the best one for you." You did that... and you did that... Rehashing it over and over is where you are making the mistake. No one of us here can stand infinite scrutiny in any decision we make in life. You made your decision. Stand by it. If you need to make another decision in the future, then collect all the facts, research your options again, and make a decision again. Quit beating your self up over this, Skeptic. If you do as I've recommended, the only mistake you can make is rehashing this into no decision and no treatment -- and that is a deadly mistake! > I've finally come to grips with my condition and have made a decision, > but as I read the posts every day, I just get filled with more anxiety > over my future. I've never said this before to anyone, but if readint these posts is your problem, quit reading them. Wait until after the surgery and report back then of your success. > Why do I listen to my intellect when my entire (symptom-less) body say > "no" to my upcoming RP? I do not know the statistically accurate number, but I wouldn't be at all surprised if 75% of us on this NG were asymtomic. Furthermore, I'd be willing to wager that 90% of those who are diagnosed AFTER symptoms already have advanced (read "incurable") prostate cancer. > Late night rambling, sorry.......I know this doesn't help anybody :( Again, the broken record response: Don't worry about that. We are hear to listen. And, every time you ask the questions, I'll answer you (unless someone else has). We will get through this together.  SignaturePSA 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 10/11/07 Non Illegitimi Carborundum >Why do I listen to my intellect when my entire (symptom-less) body say >"no" to my upcoming RP? The same way that your intellect commands you to enter a plane and "fly" in order to get to some place quickly - even if your entire body is afraid of flying... you end up accepting the accumulated knowledge of society (e.g. your changes of a plane crash are minimal... a high PSA can be a sign of a very unpleasant death if you do nothing about it...). Just >>Why do I listen to my intellect when my entire (symptom-less) body say >>"no" to my upcoming RP? > > The same way that your intellect commands you to enter a plane and > "fly" in order to get to some place quickly - even if your entire body > is afraid of flying... Oddly, I was thinking of exactly that example. Every time I go to an airport and look at the enormous airliners I think, "That thing is heavy and huge! How in the world can it fly?" All my "instincts" tell me it won't fly. Our so-called "instincts" are based on common life experiences. There are a great many facts of nature that defy those "instincts". Who would have imagined, for example, that matter consists mostly of empty space? Who would have imagined that the sun is more than a million times larger than the earth, or that the earth goes around the sun instead of vice versa, or that every cell in our bodies contains the same three billion base pairs of DNA? Our "instincts" all tell us otherwise. Our eyes and ears and other sense organs provide us with information about middle sized, middle distance, objects around us. They are useless as instruments for providing direct observations of cancerous prostate cells. Fortunately however, we also have very complex brains that are able to integrate information from indirect sources like lab test results and death statistics. So my advice is, when reason and "instincts" disagree, go with reason. Your "instincts" can kill you. Alan > I've learned a lot from the information posted from this group but I'm > wondering, how much of this [quoted text clipped - 15 lines] > I took one of the Steve's advice and ordered A Primer on Prostate > Cancer by Stephen Strum and it's like reading a horror story.... That seems to me to be a good reason not to read Strum's book. If you have not already read Peter Scardino's book, I suggest you do so. If you've already read it, read it again. He is authoritative and as good a representative of the consensus on the subject as you can get, yet he manages not to be alarmist. > Why do I listen to my intellect when my entire (symptom-less) body say > "no" to my upcoming RP? Well, what are you considering instead of the RP? > I've always trusted my inner feelings and instincts to get me this far > and now I have to stifle those trusted feelings and do something > totally counter to the way my emotions and body feels. > This is like forcing yourself to walk off a cliff, while saying don't > worry, it's good for you, it'll be worth it. All these feelings are quite natural, as long as they don't prevent you from making a decision and then following through. It is difficult, but you will get through it. > Late night rambling, sorry.......I know this doesn't help anybody :( On Christmas Eve, Len replied to "skeptic" in pertinent part: (quoting "skeptic") >> I took one of the Steve's advice and ordered A Primer on Prostate >> Cancer by Stephen Strum and it's like reading a horror story.... Len replied > That seems to me to be a good reason not to read Strum's book. Yes indeedy. Don't try to learn the truth, however unpleasant; hide from it. > If you have not already read Peter Scardino's book, I suggest you do > so. If you've already read it, read it again. He is authoritative > and as good a representative of the consensus on the subject as you > can get, yet he manages not to be alarmist. Alarmist?? "Just" quotes Scardino as saying this, incredible as it is: ""PSA is such a powerful, effective early warning system that overall quality of life may be better if we simply postpone hormone treatment until the PSA reaches *20* or so, or there are other signs of impending trouble." Twenty ng/mL! To which I reply Yessirree, wait until that tumor burden is high, then try to catch up. "Other signs of impending trouble." Such as metastases, for example? IMO, little short of insane. Regards, Steve J "We must tailor the treatment to the nature of the disease. We must listen to the biology." -- Stephen B. Strum, MD Medical Oncologist And "outlier" according to Len the math teacher. >"Just" quotes Scardino as saying this, incredible as it is: ""PSA is >such a powerful, effective early warning system that overall quality of >life may be better if we simply postpone hormone treatment until the PSA >reaches *20* or so, or there are other signs of impending trouble." "Skeptic" started this thread to discuss his feelings regarding his upcoming RP. The quote from Scardino that you mention is, as you probably know, related to advanced pca - when front line & salvage treatments for local disease were ruled out. Quite a different scenario. Just On Christmas Day, Just replied to me: > "Skeptic" started this thread to discuss his feelings regarding his > upcoming RP. Indeed he did, and it has been subject to "thread drift," a not-unusual event. > The quote from Scardino that you mention is, as you probably know, > related to advanced pca - when front line & salvage treatments for > local disease were ruled out. Quite a different scenario. No, I did not know that. It is not clear from the quotation itself. And standing idle while the PSA rises, advanced case or not, to 20? Not a chance. Rising to 20 certainly *makes* it an advanced case, it seems to me. I should point out that I was responding to Len's recommendation of Scardino's book, in which he (Len) wrote that Scardino is not "alarmist," implying that Strum is, and that Scardino represents the "consensus," whatever that is and to the extent that that is a virtue. I used the quote to show that Scardino has certainly said something very alarming and is not the paragon Len might have us believe. Anyhow: I hope all in the "Just" gang are having a fine Christmas. Regards, Steve J > On Christmas Day, Just replied to me: > [quoted text clipped - 21 lines] > used the quote to show that Scardino has certainly said something very > alarming and is not the paragon Len might have us believe. Let's try to clarify situation. He was alarmed as the result of reading Strum's book, so from that I take it to mean that what he read there alarmed him. I haven't read that book, but I've read some of Strum's articles. Strum does discuss RP and radiation therapy, but it is my impression, perhaps false, what he is most concerned about is cases which are borderline for HT where some urologists may go ahead and perform surgery anyway. I'm sure that happens. But it is my impression that skeptic's case is not in that league. He does not appear to be at present someone for whom HT is an appropriate primary form of treatment. Getting back to Strum, I may be wrong, but I don't believe he recommends HT for early cases which don't show signs of possible metastasis. But he would use it in borderline cases where many urologists might use radiation, or for a man young enough, perhaps surgery. He would also begin HT earlier than many other medical oncologists. From my reading of the literature, I think there is reason for honest disagreement about such matters. As to when to begin HT in cases where the likelihood of metastasis is high, I agree that Scardino would put it off until PSA rises fairly high. He gives the figure 20 ng/ml, but he adds that other aspects of the progression such as the grade of the cancer or whether it was found in lymph nodes will also affect the decision. Moreover, if you read the entire section in his book you see that he freely admits that there are differences among experts about when to begin HT. The problem is that HT will bring down PSA pretty quickly, but the evidence that early HT actually slows down the progression of the cancer is not that strong. I don't think anyone who seriously reads that section will come away with the idea that under no circumstances should one begin early treatment. I think everyone who has been following the discussion here must realize that when to begin HT for metastatic cancer is a difficult decision. The evidence that starting early will actually extend your life is weak, and there are serious side effects of the therapy--as IP regularly reminds us. On the other hand, it is clear that waiting too long can be a serious mistake. Fortunately for skeptic, he does not appear now to be in the situation where he has to make such a choice. In any case, whether you like it or not, Scardino's opinion today is fairly close to the consensus. > Anyhow: I hope all in the "Just" gang are having a fine Christmas. > > Regards, > > Steve J On Christmas Day, Leonard Evens replied to me, in pertinent part: (snip) Regarding _A Primer on Prostate Cancer_ > I haven't read that book, but I've read some of Strum's articles. I am grateful that Len has forthrightly acknowledged that he has not read the Strum/Pogliano book. Based upon that fact, I think it reasonable to conclude that Len's comments about Dr. Strum are not to be considered well-founded upon actual knowledge. I do agree that the field of PCa medicine is wracked with controversy, occasionally bitter. I have been told by a cardiologist to whom I mentioned this that such is not at all unusual in medicine as a whole. (snip) > In any case, whether you like it or not, Scardino's opinion today is > fairly close to the consensus. Ah, there's that chimera "consensus" again..... It matters not whether I like it or not, as I have seen no evidence that it exists. Regards, Steve J "What are the facts? Again and again and again -- what are the facts? Shun wishful thinking, ignore divine revelation, forget 'what the stars foretell,' avoid opinion, care not what the neighbors think, never mind the unguessable 'verdict of history' -- what are the facts, and to how many decimal places? You pilot always into an unknown future; facts are your single clue. Get the facts!" --Lazarus Long |
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