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Medical Forum / Diseases and Disorders / Prostate Cancer / April 2006my blog on my experience with prostate cancer....detailed, discussed treatments, surgery I had, some images etc - hope it helps someone else
it is here and I update as needed. http://prostate-cancer-log.blogspot.com/ JC Ringwood NJ > it is here and I update as needed. > [quoted text clipped - 3 lines] > > Ringwood NJ That was a very informative piece of writing. Thanks. Alan >it is here and I update as needed. > [quoted text clipped - 3 lines] > >Ringwood NJ Thank you Joe C for your detailed, informative - not to say painstakingly meticulous - log and the added thoughtfulness of your links. I was surprised to find it made me feel a little downhearted. I couldn't think why. I'm sharing my feelings with our group. I am in the British National Health System. I am not a private patient, but I do not have to pay and am grateful that I can get first-classs specialists to attend to me without charge, (although I have paid large taxes all my life towards the system). Joe is in the private care of what are evidently a number of top U.S. specialists. He has had numerous tests beyond those available in the NHS , and - at any time - personal consultations immediately available of the most detailed kind and not available to NHS patients. And yet. Midst all this immediately available,and caring specialism, he writes: "this continues to get complicated, with a multitude of choices " and then: "Each approach has its advocates also, surgeons want to do surgery and radiation oncologists want to use radiation so it is for the patient (!) to decide what is best. But we do not have the education, skills or the experience to make an informed decision." "I thus placed a call to Dr. FrankM as why do we have to decide but he was unavailable at the time. He left a message that I am to decide what makes sense for me." So even in the world's most optimised environment, Pca is an illness (advise me please; is it unique in that respect?) which consciously calls for the patients, not the doctors, to roll the dice into their future. As my son Nick, who provides wonderful support, confirms, none of this matters. I've got a new treatment available. I'm confident in my specialists. So I'll be Ok tomorrow! But I think it reinforces my belief that we can analyse the decimal points until we are all blue in the face, but at the end - roll the dice. Joe, thanks, keep us in touch. I'll do my bit and provide a diary too, but rather, after the treatment. My very best wishes for a very successful outcome, and, to everybody, we'll all be OK tomorrow! MikeHi > I am in the British National Health System. I am not a private > patient, but I do not have to pay and am grateful that I can get > first-classs specialists to attend to me without charge, (although I > have paid large taxes all my life towards the system). I'll bet you'd rather NOT get your money's worth! ;-) > Joe is in the private care of what are evidently a number of top U.S. > specialists. He has had numerous tests beyond those available in the > NHS , and - at any time - personal consultations immediately > available of the most detailed kind and not available to NHS patients. I'll be surprised if we (the U.S.) remain that fortunate when we switch to an NHS. > "Each approach has its advocates also, surgeons want to do > surgery and radiation oncologists want to use radiation so it is for > the patient (!) to decide what is best. But we do not have the > education, skills or the experience to make an informed decision." Neither did most of us here until we realized how complex, confusing, and personal this particular cancer and its treatments are. I didn't even know what my PSA meant until I was two years overdue for treatment, despite the fact that I've studied health literature for decades. > So even in the world's most optimised environment, Pca is an illness > (advise me please; is it unique in that respect?) which consciously > calls for the patients, not the doctors, to roll the dice into their > future. Yes, primarily because its benefits are not guaranteed but some combination of SEs are, so choosing among even the known SEs, let alone the statistical ones, involves very personal priorities. There are more or less 12x11x10xetc orders in which we can prioritize a dozen SEs; few of us would prioritize them the same, and surely no doc can do it for us. > As my son Nick, who provides wonderful support, confirms, none of this > matters. I've got a new treatment available. I'm confident in my > specialists. So am I. But they still cannot prioritize my preferences for me, nor tell me how effective treatment will be, nor tell me which SEs I will face. > But I think it reinforces my belief that we can analyse the decimal > points until we are all blue in the face, but at the end - roll the > dice. Coins and dice needn't be involved at this first-treatment stage. If we study the facts and statistics and trends thoroughly enough, a clear choice FOR EACH CASE AND PATIENT should emerge. I suspect that process is necessary if we are to minimize agonizing over that decision when not everything goes as planned. I.P. >> I am in the British National Health System. /BIG SNIP Hi IP Freely I'm sorry, IPF, if I did not express myself more clearly. Certainly I am surprised at your criticisms. You seem to believe I am a dangerous advocate of a switch from private health to an NHS-type system? Eh? What? Who me? S'cuse me! It's free. But I.P. - you're talking to a victim of the long, frustrating and at times deeply depressing waits, and lack of communication with patients resulting from an overloaded and bureaucratic system stifling dedicated doctors, and patients alike. But when we finally and wearily get into the right theatre, we can find docs who are excellent. I simply made the point that Joe C's blog was of a patient able to be in constant and instant communication with all sorts of skilled sources of Pca advice. I've seen two specialists in the last six months. Yet Joe too has arrived at the conclusion that when all's said and done, it's up to him, a layman, to make the choice. Just like us. And that depressed me, for a day. It somehow rammed home the fact it's a roll of the dice. Hence my post to get it off my chest. But, you don't think it's true anyway. I detect a certain scorn indeed! You write: >Coins and dice needn't be involved at this first-treatment stage. If we study the facts and statistics and trends thoroughly enough, a clear choice FOR EACH CASE AND PATIENT should emerge.< Well, that's a relief. Except when I added up your arguments they didn't arrive at the sum of your conclusion. You point out: Pca and its treatment is: >complex, confusing< There are: >more or less 12x11x10xetc orders of SE's..< All we need do is: >..study the facts and statistics and trends thoroughly,
< "Thoroughly" = very bright people, statisticians, and skilled researchers. IPF - how many Pca patients do you believe fit these categories? Or can say, like you, >I've studied health literature for decades.< ? Trouble is, the answer is too simple and spoils the fun for those who love a good intellectual set-to. I've just spotted Steve Jordan's post of 28th March quoting from the study by Steven B. Zeliadt, Ph.D., M.P.H., of the Fred Hutchinson Cancer Center in Seattle. >It is very likely, the authors add, that patients "have significant limitations in their ability to identify biased information, as well as their ability to weigh complex information about the outcomes that are important to them."< Is it really so difficult to understand, and sympathise with? Very best wishes MikeHi > Hi IP Freely > I'm sorry, IPF, if I did not express myself more clearly. Certainly I > am surprised at your criticisms. You seem to believe I am a dangerous > advocate of a switch from private > health to an NHS-type system? Eh? What? Who me? S'cuse me! I don't know what you're talking about. I'm not aware of any criticism of you, nor of any implication that you advocate anything. If anything, I perceived and agreed that your NHS has worrisome flaws. > when all's said > and done, it's up to him, a layman, to make the choice. Just like us. > And that depressed me, for a day. It somehow rammed home the fact it's > a roll of the dice. Hence my post to get it off my chest. And hence my post trying to alleviate your concern by pointing out that once we read enough, we can put the dice away and make a better decision than the docs can. The burden should be on our shoulders (i.e., should be a load we can learn to manage) rather than on our chest (implying victimhood we cannot do anything about). Knowledge is power, literally. The only alternative, it seems, is educating our doctors in our criteria -- a significant undertaking few of them have time for. And tests apparently show that pts who choose their own treatment not only do better but are also less upset by less than ideal outcomes. > But, you don't think it's true anyway. I detect a certain scorn > indeed! What you call scorn was meant as encouragement and enlightenment. You write: > >> Coins and dice needn't be involved at this first-treatment stage. If we study the facts and statistics and trends thoroughly enough, a clear choice FOR EACH CASE AND PATIENT should emerge.< > Well, that's a relief. Except when I added up your arguments they > didn't arrive at the sum of your conclusion. You point out: > > Pca and its treatment is: complex, confusing Nothing penetrates complexity and confusion better than knowledge. I'm afraid of spiders because I know nothing about them, but I began playing with snakes as a kid after reading the definitive book on them. > There are more or less 12x11x10xetc orders… of SE's.. Which is why no doctor is qualified to evaluate a patient's preferences among them. Pt A may rate potence as not only his highest, but almost his ONLY criterion; Pt B may not give a damn about potence but absolutely will not risk bowel complications. And how they chose among the other 10-20 SEs is anybody's guess unless each pt analyzes his own preferences and finds a doctor with the time and interest to discuss them at great length. > All we need do is: >> ..study the facts and statistics and trends thoroughly,…< > "Thoroughly" = very bright people, statisticians, and skilled > researchers. That level of expertise is not required to make a sound decision. While such experts MIGHT make a slightly better choice, they may at best just improve the picture's fourth decimal place, at worst may just reach paralysis by analysis. It certainly doesn't take a statistician to understand that A is 35% more likely than B, that x% of RT patients need their shoes shined, or that y% of Gleason 8 pts with two left feet are likely to be alive 10 years from now. All that p=.022(E=MC**2)pi*R**2 Bayes Risk mumbo jumbo is for the statisticians; you'll notice the PC books get by just fine without it (and when I ask what it means here, no one can or will explain it, so it must not be relevant.) In this case, "thoroughly" = tons of clicking on the websites recommended in this forum plus reading pertinent chapters in a few books. The mumbo jumbo can be ignored, and some of it even become clear despite our best attempts to ignore it. > IPF - how many Pca patients do you believe fit these categories? Or > can say, like you, >> I've studied health literature for decades.< I'm referring to lay literature, not medical literature. i.e., Magazines, newsletters written for laymen, and hospital and university websites written for patients. That's why I said "health", not "medical". I didn't bother to read "medical" lit until I got cancer, and even now I jump straight to the abstract's CONCLUSIONS section -- one short paragraph written in plain language for you and me. Only if that's fascinating and relevant do I try to make sense of the rest of the abstract. It's all about gists, not decimal places; cancer outcome decimal places are for statisticians, not realists. >> It is very likely, the authors add, that patients "have significant limitations in their ability to identify biased information If it came from a human, it's biased. The only two unbiased opinions I ever recall hearing came from my rad onc and my automatic transmission shop. The former recommended prostatectomy and the latter said my 245,000-miles tranny performed flawlessly and needed no work. > as well as their ability to weigh complex information about the > outcomes that are important to them."< Physicians' arrogance! Only YOU know what outcomes are important to you, in what order, and HOW important each outcome is. 1. Ya lists them -- potence, continence, weight gain, osteoporosis, hot flashes, weakness, memory lapses, personality changes, pain, time off work, cost, and the other 10-15 factors (from reading). [Your doc will not have the time to lay 'em all out for you.] 2. Ya ranks 'em according how important they are to you. [You doc hasn't a clue until you tell him; he thinks you care only about angle of dangle and funny underwear until you tell him otherwise.] 3. You list treatment options (there's just WW, surgery, and radiation at this stage; the rest is nuances first time around) across the top of a chart and outcomes (your top several criteria are sufficient; who cares about brittle hair or total impotence as long as they're shooting 80?) -- good and bad -- down the side and start filling in the matrix so you can begin to see which treatment emerges as YOUR choice. 4. This ain't complex in the sense that it's over our heads; it's just time-consuming. > Is it really so difficult to understand, and sympathise with? Yup, because anyone who can write and read this forum -- and I don't mean Ed's and Ron's dissertations -- can do the homework. Some may not KNOW it until they try, but it's within their grasp. Proof is no farther away than the cancer shelf in your nearest bookstore. Once you read one book, you'll begin to see why a good doc won't try to impose a treatment on a guy who can read and understand a newspaper. I.P. Hello both, I too have misgivings about the certain benefits of knowledge. I don't believe it always equates with power. >> Hi IP Freely >> I'm sorry, IPF, if I did not express myself more clearly. Certainly I [quoted text clipped - 20 lines] >apparently show that pts who choose their own treatment not only do >better That certainly has a ring to it. Any data to support this? > but are also less upset by less than ideal outcomes. That's bound to be the case. If you take the initiative, there's no scapegoat and you can hardly bear your consultant any resentment if you take your own decision. >> But, you don't think it's true anyway. I detect a certain scorn >> indeed! [quoted text clipped - 6 lines] >If we study the facts and statistics and trends thoroughly enough, >a clear choice FOR EACH CASE AND PATIENT should emerge.< Only if it's possible to formulate a decision-making algorithm. A choice will always emerge and for some it may 'feel' spot on. Some will probably feel uneasy. Others will be racked with doubt. I don't believe that more knowledge (of the kind that is available!) necessarily helps though I acknowledge that it will for some. >> Well, that's a relief. Except when I added up your arguments they >> didn't arrive at the sum of your conclusion. You point out: [quoted text clipped - 4 lines] >afraid of spiders because I know nothing about them, but I began playing >with snakes as a kid after reading the definitive book on them. I did the same as you (spiders) - but this wasn't knowledge so much as homespun aversion therapy. >> There are more or less 12x11x10xetc orders
of SE's.. Quite!, although I don't think it would make much difference if there were only 2! orders of SEs. Choosing which one might still leave you facing a dilemma. Apples and pears. Pick up the dice. >Which is why no doctor is qualified to evaluate a patient's preferences >among them. Pt A may rate potence as not only his highest, but almost >his ONLY criterion; .... then it's a no-brainer! > Pt B may not give a damn about potence but >absolutely will not risk bowel complications. another no-brainer. > And how they chose among >the other 10-20 SEs is anybody's guess But if they're optimising their decision for a single SE, the other 10-20 don't enter into it. >unless each pt analyzes his own >preferences and finds a doctor with the time and interest to discuss >them at great length. True, there will never be enough time to go into the detail. >> All we need do is: >>> ..study the facts and statistics and trends thoroughly, < [quoted text clipped - 70 lines] > >I.P. I'd be with the first to applaud the acquisition of knowledge general and particular - for it's own sake at least and, as you've found for yourself, a vital and effective aid to making your decision. But it doesn't work for everyone. Some can process the data meaningfully - others can't. Reading Scardino's book has not made it any easier for me to opt for a 'best' strategy in this first round (RT/RP/WW). My RT consultant advised against the risk of 'information overload' (ha! - at my elementary level!) and while of course you're right to underline the difficulties trying to make Tx choices with hard-pressed consultants, why should her advice have been offered in anything other than good faith? I think she was telling me to roll the dice. sorry about the nym - agent newsreader has confused me with my 'address' > Hello both, I too have misgivings about the certain benefits of > knowledge. I don't believe it always equates with power. "Always"? Me, neither. >> tests apparently show that pts who choose their own treatment not only do >> better > > That certainly has a ring to it. Any data to support this? I just read that comment in one (mainstream: Harvard, Mayo, J-H, Consumer Reports on Health, etc.) medical newsletter or another days ago. Don't recall which one. >>>> Coins and dice needn't be involved at this first-treatment stage. >> If we study the facts and statistics and trends thoroughly enough, [quoted text clipped - 5 lines] > believe that more knowledge (of the kind that is available!) > necessarily helps though I acknowledge that it will for some. I've used both algorithms and my gut in different scenarios, and this subject, IMO, is too complex, fuzzy, contradictory, and personal to work reliably with an algorithm. I "figgered" my research was over when it began producing mostly repeat references and no fresh data, especially when what little WAS new simply favored the same decision. Trials and my doc's advice and polls of this forum and Google all began to converge, so I realized it was time to wrap it up, act, and get on with my life.. >>> Well, that's a relief. Except when I added up your arguments they >>> didn't arrive at the sum of your conclusion. You point out: [quoted text clipped - 5 lines] > were only 2! orders of SEs. Choosing which one might still leave you > facing a dilemma. Apples and pears. Pick up the dice. I think that if I had still felt I needed dice, I'd have kept Googling until it was getting REALLY fruitless. Once I identified and prioritized my top 4-5-6 QOL criteria, bracketed the benefit picture, and began finding no significant opposing data, I made my decision and cut back 95% on my research. I've seen nothing in the 14 months since then to change my mind. > But if they're optimising their decision for a single SE, the other > 10-20 don't enter into it. I suspect that most people who would make a decision as vital as initial or adjuvant PC tx based on just one QOL factor gleaned from a book also buys a Ford or Chevy just because he's a Ford or Chevy man, not because he's a deep thinker. > Reading Scardino's book has not made it any easier for > me to opt for a 'best' strategy in this first round (RT/RP/WW). That's surprising; you must have an unusual case. Or maybe Scardino isn't as specific as Walsh (I studied Walsh, as his was my first book. I've merely skimmed Scardino, as it came along late in my decision process. Walsh did seem more detailed, but I still felt my money was well spent on each of the dozen or so PC books I bought, as each contributed useful information to my first and second tx decisions. Go see if Walsh doesn't make your decision easier; IIRC, it left little to the dice in choosing a first treatment. > My RT > consultant advised against the risk of 'information overload' (ha! - > at my elementary level!) and while of course you're right to underline > the difficulties trying to make Tx choices with hard-pressed > consultants, why should her advice have been offered in anything other > than good faith? My doc's good faith doesn't take my own, personal QOL priorities into account. Only after I spent weeks analyzing the QOL issue was I able to make and present my criteria and adjuvant tx decision to my oncology team; there was too much at stake with both benefits and SEs to get out the dice. Similarly, just my initial cut at the living will which may determine my ultimate fate took hours with a 20+ page detailed workbook; I've not even begun reading the handful of books I've collected on the topic. There's no way in hell I'm leaving that decision in the hands of a buncha docs who took an oath to guarantee that I spend my last few months in mindless agony with cancer or my last decade staring at the sheetrock with Alzheimer's. I.P. <snip> (quite a bit of which perhaps boils down to the following...) >> My RT >> consultant advised against the risk of 'information overload' (ha! - [quoted text clipped - 8 lines] >team; there was too much at stake with both benefits and SEs to get out >the dice. I think my consultant has noticed that I see only a dilemma and suspects (as I do) that more info won't aid ME in making a choice between RT/RP. As you said earlier the data is fuzzy and one doesn't necessarily need to sweep too far up the learning curve before being slapped with a choice between 2 bundles of SEs, neither of which is a clear-cut softer option, and neither of which wins even the barest hint of overall favour from the professional collective. On AHT I suspect it may be a different matter - i've only skimmed a few of those posts here and from the various points being made and my sketchy understanding of them, it looks as though this is much more an area where one needs to be well-informed. I'll cross that bridge when I come to it. BTW, I would never advocate ignorance as a strategy and I would urge any newly diagnosed to do as all of you advocate here - to get as informed as possible. But I also think, depending on the nature of the choices and one's personal reaction to them, each individual will meet a wall impenetrable to further rationalisation. >Similarly, just my initial cut at the living will which may >determine my ultimate fate took hours with a 20+ page detailed workbook; [quoted text clipped - 3 lines] >months in mindless agony with cancer or my last decade staring at the >sheetrock with Alzheimer's. I'm completely with you on this. >I.P. > one doesn't > necessarily need to sweep too far up the learning curve before being > slapped with a choice between 2 bundles of SEs, neither of which is a > clear-cut softer option, and neither of which wins even the barest > hint of overall favour from the professional collective. Here's where the SE picture differentiated for me, in case it's of any use to you: 1. I'd infinitely prefer permanent mild-to-moderate urinary incontinence to frequent bowel urgency or ANY long-term fecal incontinence. 2. Under the presumption that my G8 PC will return some day, I don't want to fire both barrels at my first alligator (in the sense that RT pretty much precludes subsequent RP.) 3. For several reasons, I want my post-op pathology so I can anticipate, research, and manage my next steps if and when it returns. > On [ADT] I suspect it may be a different matter - i've only skimmed > a few of those posts here and from the various points being made > and my sketchy > understanding of them, it looks as though this is much more an area > where one needs to be well-informed. I agree ... yet it also has fuzzier data to work with. It's a far bigger dilemma, IMO, unless one tries it out and encounters either SE extreme. > I'll cross that bridge when I come to it. I agree, just as I haven't yet researched SRT very much. But you are likely to be faced with the ADT bridge as soon as you emerge from your RT or RP. You'll want some advance knowledge about it, and will probably need to research it heavily within a month or two after initial tx. That, or just try it out and see how it treats you. But even then, you'll want to know enough to keep your docs on their toes; many of them ignore some important stuff, such as prevention of osteoporosis and gynecomastia. > I also think, depending on the nature of > the choices and one's personal reaction to them, each individual will > meet a wall impenetrable to further rationalisation. I hope that's not a common experience. I hope, and rant under the assumption, that a majority will reach a Eureka before they reach a wall. I'd surely appreciate some anecdotal feedback on that from any and all facing a tx decision. I.P. >> one doesn't >> necessarily need to sweep too far up the learning curve before being [quoted text clipped - 6 lines] >1. I'd infinitely prefer permanent mild-to-moderate urinary incontinence >to frequent bowel urgency or ANY long-term fecal incontinence. Sure, I think that must be a given. >2. Under the presumption that my G8 PC will return some day, I don't >want to fire both barrels at my first alligator (in the sense that RT >pretty much precludes subsequent RP.) Yes, it seems RP as a starter gets you 2 possible bites of the cherry. >3. For several reasons, I want my post-op pathology so I can anticipate, >research, and manage my next steps if and when it returns. In fact, this was pointed out by my RP consultant when I last saw him. ... it was exactly these 3 considerations which I latched onto - I'm reassured that you did too. Generally I found most of the statistics - the actual numerics - hard to hold on to, insufficiently differentiated (what a useful expression that is!) and finally not meaningful enough. On reflection, I think my only reservations about RP are rooted in (a) misgivings I have about my overall state of health and eligibility for surgery - no actual illness, but not a particularly good specimen (non-scientific, self-appraisal) for 61 - and (b) that an 80% chance of another 10 years without treatment, albeit with a difficult ending, might be enough. Life is interesting but I don't have a family or any trappings which give me determination for longevity. >> On [ADT] I suspect it may be a different matter - i've only skimmed > > a few of those posts here and from the various points being made [quoted text clipped - 11 lines] >RT or RP. You'll want some advance knowledge about it, and will probably >need to research it heavily within a month or two after initial tx. Why so soon? >That, or just try it out and see how it treats you. But even then, >you'll want to know enough to keep your docs on their toes; many of them [quoted text clipped - 9 lines] >wall. I'd surely appreciate some anecdotal feedback on that from any and >all facing a tx decision. I've probably made too much of this, and projected my own uncertainties into an unreliable generalisation. But I'm thinking a little more clearly - thanks. >I.P. I.P. wrote >> 1. I'd infinitely prefer permanent mild-to-moderate urinary incontinence >> to frequent bowel urgency or ANY long-term fecal incontinence. > > Sure, I think that must be a given. Apparently not, given the number of people who choose, even broadly recommend, RT over RP without specific surgery contraindications. > I think my only reservations about > RP are rooted in (a) misgivings I have about my overall state of [quoted text clipped - 4 lines] > but I don't have a family or any trappings which give me determination > for longevity. I hear that last statement IN BOLD CAPS, but I'd at least want some medical opinions on three surgery candidate issues: 1. How much does my present physical condition increase my surgery risk? 2. Can I reduce the additional risk by a few months in the gym without losing ground on my cancer? 3. Do I love life enough to go to the gym? (The primary difference between robust, energetic, vibrant 61-yo men and 61-yo sluggos is very often just exercise.) >> But you are >> likely to be faced with the ADT bridge as soon as you emerge from your >> RT or RP. You'll want some advance knowledge about it, and will probably >> need to research it heavily within a month or two after initial tx. > > Why so soon? Because so many uros are eager to fire at least two barrels at PC even if the first seems successful. It's in their genes and their oath, and many don't know or admit a whole lot about the QOL issues. > I've probably made too much of this, and projected my own > uncertainties into an unreliable generalisation. I don't believe one can readily "make too much" of the ADT issue unless his sole tx criterion is maximum longevity. I.P. >I.P. wrote >>> 1. I'd infinitely prefer permanent mild-to-moderate urinary incontinence [quoted text clipped - 4 lines] >Apparently not, given the number of people who choose, even broadly >recommend, RT over RP without specific surgery contraindications. I thought I read only yesterday that the relative figures for bowel complications were 10% against 5% (RT/RP). If that's so, then I think many will perceive these two figures as being the 'same order of magnitude' (even though it's a 2:1 ratio). >> I think my only reservations about >> RP are rooted in (a) misgivings I have about my overall state of [quoted text clipped - 13 lines] >between robust, energetic, vibrant 61-yo men and 61-yo sluggos is very >often just exercise.) Your optimism is noted I.P. although whenever in the past I've tried to fitten up, I found it never got any easier. Everyone, I'm sure, has a constitutional upper limit, and I fear mine is low! Some back problems too. Are there any online fitness programmes that you know of? >>> But you are >>> likely to be faced with the ADT bridge as soon as you emerge from your [quoted text clipped - 12 lines] >I don't believe one can readily "make too much" of the ADT issue unless his >sole tx criterion is maximum longevity. I'll be reading - and asking questions. >I.P. > whenever in the past I've tried to fitten up, > I found it never got any easier. Everyone, I'm sure, > has a constitutional upper limit, and I fear mine is low! Some back > problems too. Are there any online fitness programmes that you know > of? There are three ways to get fit: 1. A very physical job, 2. A very physical passion, or 3. Working out. Few of us are fortunate enough to have #1, and many of those who do overcome it with asinine eating habits. For folks whose jobs don't feel like rugby, the nearest substitute is hard yard work, from building a fence to shoveling snow. Even if you have neither, I'll bet some neighbor would appreciate your labor. #2 grabbed me by the scruff of the neck at age 6, and will consume me and keep me fit until I am no longer capable of physical play. It's not a matter of finding time or motivation for it; the problem is tearing myself away from it for the REST of my life. The key to this option is finding a demanding physical activity more sheer fun than eating, career, or sex; I've found several over the years. Or one could simply acquire an addiction such as running (for me that falls under category #3), but there are even champion runners who hate running and are in it for one or both of two reasons: clench-jawed COMPETITION and/or blind addiction. I envy the lucky stiffs who enjoy #3. But to me its key syllable is "work", so since no one pays me for it, it's a last resort I've turned to only over the past few winters and pretty casually until this winter, after an aging and problematic rotator cuff got me moving and a free promotional month in a big family gym took it from there. It has 10-20 exercise programs for all levels of students, ranging from gut-busting to snoozers, formal to drop-on-in, group to DIY, weights to aerobics, ball games to yoga, water to courts, daily to weekly, and free to expensive. I've tried a few, stuck with one, and had a gym staff personal trainer help me design a good program tailored to my own objectives. I'll stick to it until my outdoor play season picks up, then back way off and concentrate on #2. (The real key is several sports which overlap year-round, but mine have dropped from four down to one.) There are scores, maybe hundreds of "programmes" out there; any will work if we stick to it, none will work if we don't. Picking one is a highly personal choice. Cost can range from thousands to pennies. One thing they all have in common is that the older and softer and lamer we are, the more rapidly we improve in strength, aerobic capacity, flexibility, balance, vigor, and stride . . . and that's according to research, not wishful thinking or the gym PR dept. Even though I was already pretty fit, in about six weeks I put on several pounds of obvious muscle, visibly reduced my love handles, increased my functional strength by 50% in several exercises, improved my balance measurably, greatly improved my aerobic capacity, slept more soundly, and just flat felt much better. You can do even better, more quickly, because you're starting out less fit. I.P. >> whenever in the past I've tried to fitten up, >> I found it never got any easier. Everyone, I'm sure, [quoted text clipped - 23 lines] >for one or both of two reasons: clench-jawed COMPETITION and/or blind >addiction. I've toiled to exhaustion on many projects over the years but we're from completely different places I.P. - I envy you your appetite and energy for physical labour, unfortunately I've neither. >I envy the lucky stiffs who enjoy #3. But to me its key syllable is >"work", so since no one pays me for it, it's a last resort I've turned [quoted text clipped - 26 lines] > >I.P. I know you're right about this and if for no other reason than wanting to feel healthier I do intend to get in better shape but this will have to be within my limits. > I think my consultant has noticed that I see only a dilemma and > suspects (as I do) that more info won't aid ME in making a choice [quoted text clipped - 3 lines] > clear-cut softer option, and neither of which wins even the barest > hint of overall favour from the professional collective. I almost never suggest one tx over another in a 61-year-old in good health. But, if your analysis brings you to a dead-heat, which it seems is the case, then the decision I think is RP.  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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum >> I think my consultant has noticed that I see only a dilemma and >> suspects (as I do) that more info won't aid ME in making a choice [quoted text clipped - 7 lines] > But, if your analysis brings you to a dead-heat, which it seems is the case, > then the decision I think is RP. Ditto ... and I was a 61-yo in good health when my uro welcomed me into the club. I.P. >> I think my consultant has noticed that I see only a dilemma and >> suspects (as I do) that more info won't aid ME in making a choice [quoted text clipped - 7 lines] >But, if your analysis brings you to a dead-heat, which it seems is the case, >then the decision I think is RP. thanks Steve, yes that's what I'm leaning towards if I can be persuaded that I'm fit and determined enough for it. The consultant surgeon told me he wouldn't be knocked sideways if I decided not to go ahead. At least this left me feeling that such a choice wouldn't be insane! I wonder how many others in my shoes would leave things be? Not many I guess, but maybe hard to estimate here in this forum. (Is there a statistic on this?) > I wonder how many others in my shoes would leave things be? > Not many I guess, but maybe hard to estimate here in this forum. (Is > there a statistic on this?) That's because most of the people in this forum chose life. 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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum >> I wonder how many others in my shoes would leave things be? >> Not many I guess, but maybe hard to estimate here in this forum. (Is >> there a statistic on this?) > >That's because most of the people in this forum chose life. During 2 years of WW, I never felt I was consciously choosing death! > >That's because most of the people in this forum chose life. Well, I think that's a little harsh to assume that anyone not doing aggressive treatment is choosing death. > During 2 years of WW, I never felt I was consciously choosing death! I'm a little confused, I don't recall seeing your information. I have no idea of your risk level. What is your PSA, PSADT, DRE, etc. etc.? Your posts would make more sense in context. TIA, laurel Rosbif, I'm confused because I can't recall your basic info. Have you been diagnosed? Have a high PSA? Stuff like that? For us, surgery was pretty much a given once Steve figured out some way to accept (at least temporary and possibly permanent) impotence. He's 49, didn't have anything that showed extension except a PSA of 20-26. Now that the surgery is over, we learn it is in his lymph nodes, bladder... If we had known that going in, we would have done radiation to start, I'm pretty sure. But, we couldn't know that until the RP. Since we did all the tests. But, we probably would have done radiation with a dosage or plan that addressed the clinical stage, which had nothing to do with our pathological stage. So even that may have been under-done. As rough as it is, it feels so good to know the exact, specific animal we are dealing with here (as much as you can with PCa.) That would only come from a RP. But, that doesn't mean that RP is the only reasonable treatment. It seems like, if you are comfortable with WW the past 2 years, and your clinical information supports that, then you may well be a candidate for RT. It's gentler than RP. Find a great doc. You won't be all freaked out that your PSA doesn't drop to zero instantly, for instance. To get the most from RT you would need to do ADT for a while, anyway. Have you met with a radiation onc or have you only talked to your urologist? laurel >Rosbif, > [quoted text clipped - 27 lines] > >laurel Hello Laurel, many thanks for your info and train of thought. I can see that RP does bring that big advantage - nature of the beast etc... Yes, I've met with a surgeon and radiation onc and discussed their wares. my figs:- March '04 (59y), PSA 5.5/one core of 17 (2 biopsies - first was 'inconclusive') showing "small quantity of low-grade tumour". Yes, I know none of you here would have been satisfied with this but it was before I spotted this group and before having even heard of Gleason so happily settled for these vague yet upbeat stats. Advised at the time that WW might make sense so opted for it. intermediate PSAs 3.7/4.6/4.9/5.5/6.0/7.0 - this prompting new biopsy in Jan '06. 3 out of 10 cores showing 5%,5% and 30% gl(3+4). Mar'06 PSA 5.9 Now advised that I'm at a watershed and need to consider treatment options though RT consultant set up meeting yesterday afternoon with WW guru at Marsden hospital here. Advised to have the Marsden's own path-lab check the biopsy and PSA (as you can see, the PSAs are erratic). Then final meeting with him in a month. > intermediate PSAs 3.7/4.6/4.9/5.5/6.0/7.0 - this prompting new biopsy > in Jan '06. 3 out of 10 cores showing 5%,5% and 30% gl(3+4). > > Mar'06 PSA 5.9 > (as you can see, the PSAs are erratic). I don't know if I'd call it erratic. Aside from the March 2006 reading, it's been steadily rising. However, the doubling time, I think, is about 2 years. That's very slow growing cancer. However, it is growing. If you get it before it grows out of the prostate, you should have a great shot at a cure. 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 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06 PSA .07 .05 .06 .09 .08 .132 Non Illegitimi Carborundum >> intermediate PSAs 3.7/4.6/4.9/5.5/6.0/7.0 - this prompting new biopsy >> in Jan '06. 3 out of 10 cores showing 5%,5% and 30% gl(3+4). [quoted text clipped - 6 lines] >it's been steadily rising. However, the doubling time, I think, is about 2 >years. That's very slow growing cancer. Steve, you're right, the 'middle' sequence of my numbers is consistent and smoothly rising - I'd certainly be inclined to take those more seriously than the rogues, the very first (5.5) and last (5.9) which are over 2 years apart and little changed. I think this is why I've been advised to get a test for that last figure from a different lab. >However, it is growing. If you get it before it grows out of the prostate, >you should have a great shot at a cure. I know, I mustn't spend too much time just gawping at the figures. Oh, looks like I forgot to reply after I read it. Your blog is very good, Joe, and I can see it helping a lot of men wondering what the experience will be like. Thanks for posting it. laurel > it is here and I update as needed. > [quoted text clipped - 3 lines] > > Ringwood NJ |
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