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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2007I have joined the fraternity
Hello my now fellow travellers on the journey of prostate cancer. I have joined the fraternity. In July I wrote in this forum and asked for opinions and advise of what I may expect from a visit to an Urologist my GP referred me to due to my PSA reading. Your advice was very welcome and helpful. Well I had the consultation and a week later a biopsy of the prostate with the following result: 1 core of 10 (40%) positive, Gleason 6, Stage T1, 38cc prostate. Uro has made appointment for Bone scan and Chest x-ray 18 September and I have an appointment to again see him on the 24 September. My Urologist (Specialising in Cancer of Prostate) explained the options and concluded that in his opinion he suggests a Robotic Radical Prostatectomy) that he is a specialist in and claims to be one of the first in Australia using this technique. www.harewoodurology.com.au. He explained that Brach therapy is not a viable option due to the unusual shape of my prostate. He also is not in favour of radiation therapy in my case due to possible later complication. So, although I am in shock, I am reading and trying to educate myself and most likely have the operation early January 2008. Regards to you all, John from Australia 2001-3.7 2002-4.9 8/2002 Biopsy: 12 cores Negative 2003-3.8 2004-2.6 2005-3.6 2006-3.4 3/2007-6.3 7/2007-6.7 8/2007 Biopsy: 1 core of 10 (40%)positive, Gleason 6, Stage T1, 38cc prostate. > Hello my now fellow travellers on the journey of prostate cancer. I have > joined the fraternity. Welcome to the club. You have passed the initiation rite and will be issued a permanent ID. Damn, I am sorry to read this. The way your PSAs varied, I was really hoping that it was not cancer. Since cancer is essentially a bunch of cells reproducing out of control, you would expect a constant increase in PSA. But, as in your case, sometimes that does not happen. However, catching it at a 6+ PSA, T1, and 6 is pretty damned good. If you are in good shape, you pretty much have the whole range of treatment options from which to pick. And, if you are interested in a radiological option, you should not settle for a surgeon's opinion. Get thee to a radiologist and get his opinion as to size and shape. That bit about 'future problems' concerns me about the ethics of your uro. I had no choice because I was so young that future radiation problems would hit me when I was about your age. But you will have been well past the average lifespan of a man before they'd hit you. That is not to say that I am advocating radiation. On the contrary, I believe surgery is your best option. Your numbers are really good. About half of those who have come across this NG in the last six years have had a PSA below 6, but the average PSA has been 56! And, only 2% have had a Gleason below a 6. Your stage is the lowest possible if it's a T1a. But, you need to find out more about it from a truthful source before making an educated decision. Good luck, down under. Our prayers will be with you (though they may take 12 hours to get there).  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 (06/12/2007) Non Illegitimi Carborundum >> Hello my now fellow travellers on the journey of prostate cancer. I have >> joined the fraternity. [quoted text clipped - 15 lines] > choice because I was so young that future radiation problems would hit me > when I was about your age. <snip> Hi Steve, How young were you? I am 58 and will have the Davinci RP shortly. The regions of cancer in my prostate were at the median, right in the center of the thing, so radiation of any type was discounted because of potential damage to the uretha. Besides that, I really don't like the idea of having the organ that has the cancer sitting there in my body. My decision - making process involved long talks with a guy who had just gone through the thing, literally within a couple of months of my approaching him, and some very good discussions with Karina, the program director at the Center for Prostate Cancer at the University of Minnesota. Also, the doctor was quite candid and pragmatic about the treatment options although he is a surgeon. Then there was research on the Internet including this august body. Thanks, Steve Tew >>> Hello my now fellow travellers on the journey of prostate cancer. I have >>> joined the fraternity. [quoted text clipped - 36 lines] > Thanks, > Steve Tew At diagonosis, I was 46. I am 52 now, ready to turn 53 in 22 days. 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 (06/12/2007) Non Illegitimi Carborundum > My decision - making process involved long talks with a guy who had just > gone through the thing, literally within a couple of months of my [quoted text clipped - 3 lines] > although he is a surgeon. Then there was research on the Internet including > this august body. I'm concerned about your apparent lack of prostate cancer book research. Every one of the dozen-plus PC books I bought, plus the ones I skimmed in the bookstores, added valuable -- often invaluable -- pieces to my two decision puzzles (first and adjuvant treatment choices). There was no way I would base my future on any individual's -- or small collection's thereof -- anecdotal experiences, because they are meaningless in predicting what may happen to the next guy. Only large-scale statistics can do that, and that's where the books and studies come in (I presume your internet research included many scores, if not hundreds, of study abstracts). Nor would (or could) I heavily bias my choices on any single author, regardless of his credentials and *especially* if he is not widely and highly regarded by his peers. I made sure my book list included authors from surgical, radiological, and medical specialties, as did my consultations with live oncologists. I also dug deeply into my own short and long term priorities/criteria, without which no rational choice can be made. Only with an understanding of how I want to both live and die could I compare suites of treatment benefit and side effect statistics. I.P. >> My decision - making process involved long talks with a guy who had just >> gone through the thing, literally within a couple of months of my [quoted text clipped - 25 lines] > > I.P. I appreciate your concern, but I wonder if any further research of existing research would alter the determination that I have a confirmed cancer in my prostate, and that I don't want to leave it in my body. I do have one book, 100 Questions About Prostate Cancer, which I have read through. If there is a body of knowledge in printed form which may have information which could alter my decision what would it be? I have read much about the PH diet, and some clinics in Mexico and California whch claim to have cancer cures, but I don't have conficence in them. The radiation and chemical treatments are not suitable for my case, nor is cryo. That leaves two options, do nothing, or cut it out. unless you know of something else... Were you my counselor, what would you recommend I do? Thanks, Steve > I wonder if any further research of existing > research would alter the determination that I have a confirmed cancer in my > prostate, and that I don't want to leave it in my body. I do have one book, > 100 Questions About Prostate Cancer, which I have read through. If there is > a body of knowledge in printed form which may have information which could > alter my decision what would it be? I'm not trying to influence your decision -- that's a very personal choice; I'm just trying to influence your *knowledge*, by reading more PC books, for the reasons I stated and so you don't second guess your first treatment choice if and when it leads to medical problems, QOL problems, and/or ultimate recurrence. If you're sufficiently certain of your treatment choice that you will have no serious regrets if problems occur, and if that sufficiency come from knowledge (which should only increase) rather than from emotion (which can roam all *over* Hellenback), then maybe the other books are superfluous. I wasn't sufficiently certain of my first treatment until I read many books, and wasn't certain of my second, just-in-case, no-PSA, no-mets, treatment until I pretty much picked the internet and this forum clean of the knowledge available at that time. > I have read much about the PH diet, and some clinics in Mexico and > California whch claim to have cancer cures, but I don't have conficence in > them. Nor did my doc, who is a urology professor, an oncologist, and a very busy PC researcher working with a large body of physicians in a major city. > Were you my counselor, what would you recommend I do? Read. I virtually never deign to recommend a treatment or counsel against a (mainstream) treatment. I do my best to offer facts and some opinions, try to distinguish between the two, and let others' decisions fall where they may. It's they, not I, who must live, suffer, and/or die with them. You'll notice that I haven't even mentioned my case, treatment(s), or results, because, with a sample size of one, they mean nothing to your case. I.P. >You'll notice that I haven't even mentioned my case, treatment(s), or >results, because, with a sample size of one, they mean nothing to your >case. > > I.P. Every anecdotal tale is meaningful. Each data element in all of the surveys and studies in existence represents a story. Each story has merrit. The hearer is the sole judge of the story's personal worth. I was a Quality Assurance Officer in a US Navy patrol squadron. Statistical analysis is meaningless without the stories on which it is based. Ask an aviator. Steve > I was a Quality Assurance Officer in a US Navy patrol squadron. Thank you for your service to our country (and those around the world). > Statistical analysis is meaningless without the stories on which it is > based. Ask an aviator. Ah. A debate on anecdotal evidence between to military scientists. I think I'm going to enjoy this. >> I was a Quality Assurance Officer in a US Navy patrol squadron. > [quoted text clipped - 5 lines] > Ah. A debate on anecdotal evidence between to military scientists. I think > I'm going to enjoy this. Given that "anecdotal evidence" is an oxymoron where predictions are concerned, I suspect there is no debate, and would be surprised if anything new surfaced in this old topic. Of course, many outsiders may argue that "military scientist" is also an oxymoron. ;-) I. P. >>> I was a Quality Assurance Officer in a US Navy patrol squadron. >> [quoted text clipped - 8 lines] > Given that "anecdotal evidence" is an oxymoron where predictions are > concerned, I suspect there is no debate, You are correct. There is no debate, but not for the reason you state. >and would be surprised if anything new surfaced in this old topic. > > Of course, many outsiders may argue that "military scientist" is also an > oxymoron. ;-) > > I. P. >> You'll notice that I haven't even mentioned my case, treatment(s), or >> results, because, with a sample size of one, they mean nothing to your [quoted text clipped - 9 lines] > Statistical analysis is meaningless without the stories on which it is > based. Ask an aviator. Meaningless emotionally, but presuming a study is done right, only its statistics help others draw inferences about their outcomes. Whether one guy lives for 15 years after post-RP ADT or another guy recurs early in an ADT course tells a third guy zip about his odds. Anecdotes may reveal possible extremes, but do nothing for likelihoods. Anyone who chooses an action or predicts an outcome based on one story or a small collection thereof may as well use tea leaves. Would you base your engine overhaul schedules on Ensign Jones' encounter with contaminated fuel or on years of accumulated MTBF data? Even if you would base your cancer treatment choice on a few anecdotes ... which anecdotes would you choose? I.P. Another retired military officer, engineer, and statistics w.nker >>> You'll notice that I haven't even mentioned my case, treatment(s), or >>> results, because, with a sample size of one, they mean nothing to your [quoted text clipped - 12 lines] > Meaningless emotionally, but presuming a study is done right, only its > statistics help others draw inferences about their outcomes. Bullshit. >Whether one guy lives for 15 years after post-RP ADT or another guy recurs >early in an ADT course tells a third guy zip about his odds. Anecdotes may [quoted text clipped - 9 lines] > I.P. > Another retired military officer, engineer, and statistics w.nker snip...... >>> Statistical analysis is meaningless without the stories on which it is >>> based. Ask an aviator. [quoted text clipped - 3 lines] > >Bullshit. Bullshit from an aviator... run for cover! Just I tend to lean more towards the anecdotal than the statistics in this matter as I find the models that have been presented for statistical analysis's are poor at best, very limited in size for the most part and have an inherent bias by nature. The sample population is not consistent across the spectrum and usually not maintained for the duration of monitoring process. One only has to look at things like; definitions of cure, curative intent and probable cure to see that any conclusions of these studies are directed towards a treatment opinion being made available for the monetary gains they hope to obtain by misleading the uninformed patients. It should be obvious after reading all these studies over the past few years with all there hipe that we haven't moved any closer to effectively treating prostate cancer. Ron S. > I tend to lean more towards the anecdotal than the statistics in this > matter So, what does any one man's PC say about another's best treatment or his prognosis? If a guy has Treatment X and lives another 30 years, that merely *implies* (it does not prove) that Treatment X is not 100% fatal. If a guy dies of PC after Treatment X, it merely proves that Treatment X is not 100% curative. Beyond those no-brainers, neither says squat about the next guy's future. Statistics derived from 10,000 or 80,000 guys' outcomes after Treatment X give the next guy a range of outcomes, likelihoods thereof, and confidence levels in those likelihoods. Which is more useful in the next guy's treatment selection? I.P. >I tend to lean more towards the anecdotal than the statistics in this > matter as I find the models that have been presented for statistical [quoted text clipped - 8 lines] > over the past few years with all there hipe that we haven't moved any > closer to effectively treating prostate cancer. Excellent points, Ron. We can fairly well rely on each and every man's accounting here. They may not be the same as any other man here, but at least we are fairly certain the statistics (1 of 1) are always true and based on criteria that has nothing to do with selling books or getting grants. As we read of the experience of others, backed up by their histories, readers get a remarkable accounting of what is possible, likely, and not likely. I think you just put this debate to rest! 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 (06/12/2007) Non Illegitimi Carborundum >> I tend to lean more towards the anecdotal than the statistics in this >> matter as I find the models that have been presented for statistical [quoted text clipped - 18 lines] > > I think you just put this debate to rest! I strongly caution newbies making treatment decisions not to succumb to this irrational concept. Your lives may be at stake. I.P. >>> I tend to lean more towards the anecdotal than the statistics in this >>> matter as I find the models that have been presented for statistical [quoted text clipped - 22 lines] > I strongly caution newbies making treatment decisions not to succumb to > this irrational concept. Your lives may be at stake. My last sentence was, of course, tongue-in-cheek and intended to provoke a counter response. But, not an insult to Ron and/or me. It is not irrational to believe that one man's experience is possible and the experience of 785 men is significant criteria in making decisions. What IS irrational is dogmatically sticking to the supposed science (actually a philosophy) of variable statistics provided by disagreeing theorists, each who have multiple motivations for inaccurate reporting. Until Strumm, Walsh, Scardino, and all your references, books and monographs agree on ADT, the anecdotal, but actual, experiences of a large group of men will reign supreme as the best indicator. 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 (06/12/2007) Non Illegitimi Carborundum > the anecdotal, but actual, experiences of a large group of men > will reign supreme as the best indicator. I agree, because the actual experiences of a large group of men is called "statistics". I.P. Steve Kramer wrote: > Ah. A debate on anecdotal evidence between to military scientists. > I think I'm going to enjoy this. > Bullshit. Was that worth the wait, Steve? ;-) Maybe next time ... I.P. I whole heartedly agree with you IP. However, you are speaking of a hypothetical statistical analysis. That is not the real world. I'm a realist. The people that come to this web site don't need someone to tell them to read a book. If they are savvy enough to find this web site via computer, I'm sure they are capable of researching the appropriate books on the subject. They are most likely wanting to hear of others experiences contrary to what a medical professional might or might not tell them. After a period of time they will get a sense of what is really happening through the dialog that transpires on this and other forums. I don't believe they come here for our medical advise, only for our experiences that many of us have gone through fighting this disease. It's a story that they will not find in the medical community. They will see that there are many different outcomes to any procedure and they may not always be as good as some treatment options portray them to be. Probable the one problem with these forums that can be misleading is that many members have only been treated for the past few years with most with less than two years experience. They can describe their experiences for their time frame but they cannot project what their experiences will be in their future. They can only hope and pray for positive outcomes and hope the statistics are in there favor. Provided the statistics are not inherently flawed. Ron S. >on the subject. They are most likely wanting to hear of others experiences >contrary to what a medical professional might or might not tell them. After [quoted text clipped - 7 lines] > >Ron S. Exactly, Ron. I tuned out quick when the 'discussion' of statistical analysis, drug trials, and such began to creep into almost every thread here. Boring, too technical, and something I don't wish to devote my time and energy now trying to catch up on to try to understand the nuances of it. I may be wrong, but I think someone just came here a few days ago, shared his 'news', and within a day or so, their thread had been flipped to another 'discussion'. Maybe this exact thread. I can't tell, as my newsreader doesn't save posts, so I can't check. I read this group for the human element of our personal experiences with this cancer. Sorry for stepping on toes, but endless discussions of government drug policy, statistical fights amonst cancer specialists pushing their own theories and such is a time killer for me. Tell me instead your experience with total nerve bundle removal, the use of tri-mix and your success with orgasm after the nerve bundles have been removed. Or where I can get assured delivery of cheap (overseas) generic Viagra. Even your choice of pee-pads and why. But that's just me and I think I am feeling cranky today. Ignore as you wish....lol My apologies to those who enjoy the intellectual stimulation gained in the defense of your various causes. :) If you can keep them from thread spread, I promise I will seperate my wheat from your chaff... .:) HT Hello HT, The value of support groups -this one included- is the diversity of the members and the diversity of their opinions. In a country where there is not one government Department of Men's Health, where prostate cancer-specific research is underfunded, where medical opinion about the basics of the disease is divided to the point where one can't decide if testing for PSA is valuable or not, where men are highly apathetic about their health issues. Those participating here should be more patient with the topics on hand that being only interested in hanging their hat on an erection. Sure, very important, but so are the other topics. Both anecdotal results and statistical data are helpful in decision- making processes for those participating here. If your interest is centered in improving your sexual activity it is probably because you are doing well in managing your disease and you are trying to improve your quality of life. Nothing wrong with that. As you learn, we all learn, but think then of those others that are holding a burning candle with a short list of treatment options and come here to seek information about surviving the disease. They have their priorities too. Make allowances. Participate and exchange opinions. We all can learn from that! Wish you the best and I hope you found the cheap source of Viagra and if you did, let us know. RalphV www.pcainaz.org/phpbb > On Tue, 11 Sep 2007 07:17:53 -0400, "ronju99" > Exactly, Ron. I tuned out quick when the 'discussion' of statistical [quoted text clipped - 27 lines] > > HT > I tuned out quick when the 'discussion' of statistical > analysis, drug trials, and such began to creep into almost every [quoted text clipped - 9 lines] > the defense of your various causes. :) If you can keep them from > thread spread, I promise I will seperate my wheat from your chaff... I agree in that even with my post-graduate education in statistics, my eyes glaze over at some of the exclusively technical posts. My reaction to them now is twofold: consider the topic and, if it addresses a decision I may face some day -- e.g., SRT, ADT, XYZ (just wanted to see if you're paying attention) -- file it for future reference. That way I can save the task of making sense of them until I'm far more motivated. I don't see how a discussion of statistics and their importance to treatment decisions is a "flip", considering their crucial importance to new cancer patients. Some dude's injection experience or pad preference, OTOH, doesn't require statistics to be useful. We don't do it for the intellectual stimulation; we do it because it's the only way to predict another's primary and secondary effect prognoses given various treatment choices. 100 pages about my treatment outcome tells the next guy less about his future than does a one-paragraph abstract from a respected study relevant to his case. I.P. snip... >The people that come to this web site... >... They are most likely wanting to hear of others experiences [quoted text clipped - 3 lines] >come here for our medical advise, only for our experiences that many of us >have gone through fighting this disease. snip... I believe that anyone that comes to this newsgroup should be exposed to the reality of conflicting medical opinions, their reasoning and value attached by peers. IP's insistence on the importance of statistics / peer review is sobering and I thank him for that. There are issues of life & death and basic QOL that require more that just exchanging views about anecdotal results. On the other hand, I fully appreciate the opinion of HT: "I read this group for the human element of our personal experiences with this cancer". But there is room for both: the cold hard facts and the personal experiences. I enjoy both. >... the one problem with these >forums that can be misleading is that many members have only been treated >for the past few years with most with less than two years experience. They >can describe their experiences for their time frame but they cannot project >what their experiences will be in their future. snip... But the value of statistics is exactly going beyond one's time frame and experience, isn't it? Just > The people that come to this web site don't need someone to tell > them to read a book. Some have read no or very few PC books. I think it's very appropriate to strongly encourage them to read some of them. > I don't believe they come here for our medical advise Some, maybe many, do exactly that. > It's a story that they will not find in the medical community. Thus my surprise and dismay that so many people here object so strenuously when I relate -- and cite when I first introduce -- data and expert testimony and opinions contrary to the glossy pictures. And thus the studies, comments in books, and stated objectives of so many researchers and authors focused on bringing the dark sides of PC treatments to the public and medical consciousnesses. > Probable the one problem with these > forums that can be misleading is that many members have only been treated > for the past few years with most with less than two years experience. They > can describe their experiences for their time frame but they cannot project > what their experiences will be in their future. Thus my encouragement for newbies to regard such short-term and individual scenarios as interesting but not very useful in divining their own hypothetical outcomes. For example, my poll of this forum nearly three years ago indicated that an overwhelming majority of ADT pts have severe, usually debatably devastating, SEs. If that's representative of the real world, we're *really* being snookered by the pharmaceutical juggernaut. I.P. > For example, my poll of this forum >nearly three years ago indicated that an overwhelming majority of ADT [quoted text clipped - 3 lines] > >I.P. Speaking about the pharmaceutical industry... below a quote from Walsh's book. Food for thought... Just ----------------------------------------------------------- When Should You Begin Hormonal Therapy? (page 471) "Finally, there's something that might fit in the category of "worldly issues." You should be aware that the medical debate in this area is strongly influenced by factors that often don't get talked about openly. The pharmaceutical industry makes at least $1 billion a year on hormonal agents for the treatment of prostate cancer. There is no question that they look after their financial interests by stoking the furnace to keep sales (prescriptions) up. This happens in many ways-through direct advertising; cleverly disguised Web sites; distribution of multicoloured "scientific summaries" that endorse the widespread use of their products; or surreptitious support for medical meetings at fancy spas, at which "experts" (who receive generous honoraria, frequent-flier miles, and a free trip) promote the company cause. The massive financial and political clout - and largesse - of the pharmaceutical companies is widespread and well known among physicians of every specialty, not just urology. Not all physicians are swayed by it; many aren't. But it's out there, it's yet another element in this complicated mix, and it's something for you to take into consideration". > For example, my poll of this forum >nearly three years ago indicated that an overwhelming majority of ADT >pts have severe, usually debatably devastating, SEs. Would this count as research or anecdote? > Steve Kramer wrote: > > Ah. A debate on anecdotal evidence between to military scientists. [quoted text clipped - 6 lines] > > I.P. Your ability to selectively filter the meat out of a discussion is astounding. Thanks, Steve >> Steve Kramer wrote: >>> Ah. A debate on anecdotal evidence between to military scientists. [quoted text clipped - 7 lines] > Your ability to selectively filter the meat out of a discussion is > astounding. That one word was the entirety of your posted response to my argument for statistics. Quote: >>> >>> You'll notice that I haven't even mentioned my case, treatment(s), or >>> >>> results, because, with a sample size of one, they mean nothing to your >>> >>> case. >>> >>> [quoted text clipped - 6 lines] >> >> I was a Quality Assurance Officer in a US Navy patrol squadron. >> >> Statistical analysis is meaningless without the stories on which it is >> >> based. Ask an aviator. > > > > Meaningless emotionally, but presuming a study is done right, only its > > statistics help others draw inferences about their outcomes. Bullshit. >>> Steve Kramer wrote: >>>> Ah. A debate on anecdotal evidence between to military scientists. [quoted text clipped - 32 lines] > > Bullshit. Exactly. I enjoy a good story and the pithy interplay of personal experiences which tend to put faces on the statistics. Most folks do. You throw water on the fire of personal engagement and expect kudos. Your statistics fetish leaves you numb to the importance of personalization. These are simple generalizations, of course. It may be that in another setting you can actually participate in a discussion without pissing off others who offer sound opinion by assuming that they have revealed their entire depth of knowledge and experience in a few sentences specific to a narrow topic, and then dumping your pseudo - intellectualized, egocentric drivel on them . On the other hand your complete lack of understanding is encapsulated in your last couple of posts. I think we all understand the importance of statistical analysis, and appreciate the work of those people who produce various studies that we can peruse and then quote to show off. But... I have not met until now, a statistician who did not get the idea that the stories behind the statistics are as important as the statistics, and are an important teaching tool, illuminating the flat, expressionless terrain of data analysis, so that personal performance and experience by example and sample can be internalized by the hearer. That's a fancy way of sayin' the stories count. So, I stand by my assessment that when you say the stories are meaningless, that you are full of B.S. in spades. As a retired Navy Chief I would tell you what you should really hear, but the genteel nature of this crowd restrains me. That doesn't mean that I don't value your knowledge and contribution of data when it comes to Prostate Cancer. God Bless, Steve Tew > I enjoy a good story and the pithy interplay of personal experiences which > tend to put faces on the statistics. Most folks do. You throw water on the [quoted text clipped - 30 lines] > That doesn't mean that I don't value your knowledge and contribution of data > when it comes to Prostate Cancer. So your entire rebuttal of the unique value of statistics, and the utter uselessness of one man's experience, in helping others predict outcomes is ... a baseless personal attack full of false assumptions and accusations, self-contradictions, and out-of-context partial quotes? Not very persuasive, Chief, and a disservice to the people who come here seeking treatment decision fodder. The many very impressive Chiefs my wife and I worked with would be disappointed. I.P. >> I enjoy a good story and the pithy interplay of personal experiences >> which tend to put faces on the statistics. Most folks do. You throw [quoted text clipped - 40 lines] > > I.P. If you would take the time to read what is posted without engaging your bias filter you will find that I did not rebut the unique value of statistics at all, not one iota. On the other hand I deny, as do most folks, that individual stories relating the person's experience are useless. You began this exchange with a declaration that my decision to go with the RP was flawed in some way because you assumed I had not done adequate research. Quote: I'm concerned about your apparent lack of prostate cancer book research. Every one of the dozen-plus PC books I bought, plus the ones I skimmed in the bookstores, added valuable -- often invaluable -- pieces to my two decision puzzles (first and adjuvant treatment choices). There was no way I would base my future on any individual's -- or small collection's thereof -- anecdotal experiences, because they are meaningless in predicting what may happen to the next guy. Only large-scale statistics can do that, and that's where the books and studies come in (I presume your internet research included many scores, if not hundreds, of study abstracts). Nor would (or could) I heavily bias my choices on any single author, regardless of his credentials and *especially* if he is not widely and highly regarded by his peers. I made sure my book list included authors from surgical, radiological, and medical specialties, as did my consultations with live oncologists. I also dug deeply into my own short and long term priorities/criteria, without which no rational choice can be made. Only with an understanding of how I want to both live and die could I compare suites of treatment benefit and side effect statistics. I.P. So, it comes down to this. Unless a poster on this group kisses up to your notion of personal anecdotes being usless as part of our decision making process you degrade them. I don't like being pissed on. No one does. I am not reading a lot of books about PC, so that is reason to be concerned according to you. The bottom line is whether what I have read, and what I have learned from other sources and from my examination of every aspect of my life, has lead me to make the right decision for me... not for you. It's not about you. Once you get that through your statisics teet sucking head you may actually become somewhat likeable. Thanks for nuttin' Steve > I did not rebut the unique value of statistics at all, not one iota. Your own words repeatedly dismiss statistics as non-unique: > My decision-making process involved long talks with a guy ... > and some very good discussions with a surgeon. ... [quoted text clipped - 6 lines] > "Bullshit", to "only statistics help others draw inferences about > their outcomes". And your non-response to my question, "Would you base your engine overhaul schedules on Ensign Jones' encounter with contaminated fuel or on years of accumulated MTBF data?" strongly implies you assign no uniqueness to the predictive value of an MTBF. > I deny, as do most folks, that > individual stories relating the person's experience are useless. I never said they were useless (or meaningless). I said they were useless or meaningless *in predicting the next guy's outcome*. Light years' difference. > You began > this exchange with a declaration that my decision to go with the RP was > flawed in some way because you assumed I had not done adequate research. No, I expressed and explained my concern that your decision may have been inadequately fueled because you told us you had read only one book. If others' concern angers you, you came to the wrong place. And I "assumed" nothing; you *told" us you had read only one book, and it was not high on our recommended reading list. > Quote: > I'm concerned about your apparent lack of prostate cancer book research. etc. > So, it comes down to this. Unless a poster on this group kisses up to your > notion of personal anecdotes being usless as part of our decision making > process you degrade them. Please show us where I've "degraded" anyone (implying, I guess, that they're less of a person or something like that, as long as they are discussing PC rather shooting messengers.) And I ask you again why and how another individual's treatment experience helps --i.e., is useful or meaningful to -- predicting your experience. > I am not reading a lot of books about PC, so that is reason to be concerned > according to you. No, I said *I* was concerned. *Your* concern threshold is up to you. > The bottom line is whether what I have read, and what I > have learned from other sources and from my examination of every aspect of > my life, has lead me to make the right decision for me... not for you. I don't care what tx choice you make, any more than you should care what choice I made (which is why I haven't mentioned it i this thread). I *do* care, based on some of the horror stories we've seen here and read in the literature, when a pt tells us his research was confined to one book, "the internet", and a few individuals, because that has bitten a lot of people in the a.s (or crotch, or skeleton, or second-guess-riddled psyche). > you may actually become somewhat likeable. "Likeable?" What's "likeable" got to do with anything important? Life, like most things from parenting a child to running a nation, is far too important to be run according to opinion polls or popularity. Hell, Ted Bundy was "likeable", my in-laws' "likable" doctor told them exactly what they wanted to hear until it killed them, and worrying about our global popularity may doom the free world to annihilation by radical Islam after it experiences economic ruin via the asinine Kyoto protocol, which depends on the dismissal of a million years of scientific evidence, including statistics. You repeatedly asked for our opinions, specifically mine in some cases. I provided some for your consideration. If they weren't to your liking, ignore them or debate them; that's how the process works. My whole squadron will never forget the time our commander asked for *any* ideas regarding a tough Tomahawk cruise missile performance problem. After he ripped apart the first individual who responded, not one other person dared offer a word, and these were the military's top experts on Tomahawk operational testing. I.P. >> My decision - making process involved long talks with a guy who had just >> gone through the thing, literally within a couple of months of my [quoted text clipped - 8 lines] >in the bookstores, added valuable -- often invaluable -- pieces to my >two decision puzzles (first and adjuvant treatment choices). If you want to know the inside 'scientific' story and something of the workings of the prostate and its bits and bobs - fine, but why do we need to do so much research for a first treatment? Why isn't it enough to pick up the pamphlet, check out the SEs (where mature data exists, 'curative' prospects seem to be on a par), find and talk to a neutral consultant then pop along here to ask a few questions where and if clarification is needed? The real job of work entailed in a first treatment - arriving at a decision - isn't necessarily relieved by extra knowledge. >I also dug deeply into my own short and long term priorities/criteria, >without which no rational choice can be made. Only with an understanding >of how I want to both live and die could I compare suites of treatment >benefit and side effect statistics. > >I.P. I don't doubt a bit of homework wouldn't go amiss after a first treatment (on second thoughts give me 6 months or so to relax!) but then quite a lot of research data finds its way into a.s.c.p. anyway and is easily tracked through the archive. The 'anecdote vs. stats' war you wage from time to time is a red herring. Of course neither is a substitute for the other but a collective and continuous forum anecdote holds a functional advantage over stats in quickly highlighting a consensus of major preoccupations. A forum like this is probably as efficient a starting place as any to germinate a line of thought or concern, to try and understand what factors, thought processes and circumstances determined the course and timing of secondary treatment for others and how these might relate to ourselves. Research is delivered to the forum organically by dedicated messengers. To insist on copious research first outside the forum domain before coming here is putting the cart before the horse. > why do we need to do so much research for a first treatment? Why isn't it > enough to pick up the pamphlet, check out the SEs (where mature data [quoted text clipped - 3 lines] > first treatment - arriving at a decision - isn't necessarily relieved > by extra knowledge. Ask those questions of the many guys and spouses here who reported bad, sometimes truly sad and often irreversible, scenarios due to insufficient or bad information and/or to questions they didn't know to ask us or their docs because they hadn't read enough. We could make decisions, on anything from war to cancer treatment to choosing movies to see, quickly; we can make far better decisions with more information. > The 'anecdote vs. stats' war you wage from time to time is a red herring. > Of course neither is a substitute for the other I could not disagree more strenuously, but if you've not understood my rationale and motivation by now, after so many pages of debate on the issue, you never will. So let me just repeat this question the previous doubter hasn't yet answered: "What does any one man's PC say about another's best treatment or his prognosis? If a guy has Treatment X and lives another 30 years, that merely *implies* (it does not prove) that Treatment X is not 100% fatal. If a guy dies of PC after Treatment X, it merely proves that Treatment X is not 100% curative. Beyond those no-brainers, neither says squat about the next guy's future. Statistics derived from 10,000 or 80,000 guys' outcomes after Treatment X give the next guy a range of outcomes, likelihoods thereof, and confidence levels in those likelihoods. Which is more useful in the next guy's treatment selection?" > To insist on copious research first outside the > forum domain before coming here is putting the cart before the horse. I agree, which is why I've never recommended that. >> For example, my poll of this forum >> nearly three years ago indicated that an overwhelming majority of ADT >> pts have severe, usually debatably devastating, SEs. > > Would this count as research or anecdote? That could be argued both ways, as it's semantical. Either way, it's certainly a very small, biased factoid. Some peer-reviewed, published research has had smaller samples but far better science, and to some degree even large-scale research is just a compendium of quantified outcomes of thousands of anecdotes. To answer your broader implied question, I would not (and did not) base a treatment choice on it despite the fervor with which some responders condemned their ADT. I.P. I think we are just splitting hairs at this point. I believe we all recognize the importance of education and real life's experiences when it comes to making appropriate decisions. My problem with the statistics that have been presented in support of many of the treatment options is there validity. As I've mentioned before, it just seems that many of these studies are heavily biased and have real questionable sample populations. The parameters set out in many of these studies are of too short of duration to have any real meaning for predicting long term outcomes. Almost no one dies within the first ten to fifteen years of diagnosis of localized prostate cancer without treatment of any kind. And many live much longer than that. However, almost all the studies have cut offs within this time frame. The reason is that most of the treatments have such a short life cycle. That is they haven't been around long enough to determine how effective they are in the long run. I haven't seen one treatment option from the past that has stood the test of time. Everyone was promoted as an effective treatment option but eventually failed but then was resurrected and promoted as a new an improved treatment option. This procedure continues today. Ron S. >> why do we need to do so much research for a first treatment? Why isn't it >> enough to pick up the pamphlet, check out the SEs (where mature data [quoted text clipped - 8 lines] >insufficient or bad information and/or to questions they didn't know to >ask us Coming here and asking questions is precisely what I recommend above. Read the words. > We could make >decisions, on anything from war to cancer treatment to choosing movies >to see, quickly; we can make far better decisions with more information. That's too broad a generalisation and the poor quality of PCa stats undermines it. Increasing quantities of fuzzy information is often counterproductive - non-resolving at best. On primary treatment you say you read over a dozen books. After a positive biopsy I read the broad statistics from a UK-produced pamphlet I was given by the consultant. On a recommendation here I read Scardino but nothing else. Then I returned here, asked some questions and checked the a.s.c.p. archive. Where might I have been lacking in information do you think? What detail offered in the other 11 books might have move me to make a crucially more appropriate treatment choice? >> The 'anecdote vs. stats' war you wage from time to time is a red herring. > > Of course neither is a substitute for the other > >I could not disagree more strenuously but if you've not understood my >rationale and motivation by now, after so many pages of debate on the >issue, you never will. I've never made any attempt to explore your rationale or motivation. How peculiarly self-important of you to imagine that I might. On the anecdote vs stats issue your thinking has been consistently blinkered so forgive me if I pass on the opportunity to try and understand why. Stats are only a few mouse-clicks away, just about acceptable where they agree, thoroughly useless where they don't (more often than we'd like). OTOH a single anecdote can highlight a range of issues of major concern, suggest starting points for research and spark a chain-reaction of questions. An entirely legitimate approach to getting to grips - even if you're unable to see it. > >> For example, my poll of this forum > >> nearly three years ago indicated that an overwhelming majority of ADT [quoted text clipped - 9 lines] >question, I would not (and did not) base a treatment choice on it >despite the fervor with which some responders condemned their ADT. You can be thankful, at least, that no one rubbished you for undertaking such a poll - that's not a courtesy you would be prepared to extend to anyone else as far as I can see - at least not without first airing your puerile mantra about 1 man's anecdote and another's outcome. As far as I'm concerned, your answer sums up perfectly your tacit acknowledgment of the existence of a hinterland between stats and a collective forum anecdote. Whether it would be wise to reject the results of such a straw poll in favour of the broader research will depend upon various of our prejudices and fears. > A bunch of stuff. I must apologize if those posts included any questions he/they wanted me to answer or comments he/they expected a response to, but if so, I found only two, and they can only be answered by each patient (see below). Chalk it up to my natural preference for explicit specifics and limited comprehension of generalities; it's why I'm an engineer and scientist and not a priest or artist. All I saw was venting unrelated to my posts or my philosophy, and if that made him/them feel better, that's fine. If he/they or anyone else wants a reply, they'll have to clarify a question. "thankful no one rubbished you for undertaking such a poll"? "not a courtesy you would be prepared to extend" "not without first airing your puerile mantra" "your thinking has been consistently blinkered" Huh? "I've never made any attempt to explore your rationale or motivation." "How peculiarly self-important of you to imagine that I might." Then on what do you base your criticism of them? And where his/their questions were clear ... "Where might I have been lacking in information do you think?" "What detail offered in the other 11 books might have move me to make a crucially more appropriate treatment choice?" Only you would know the answer to those questions. As I've said many times, it's up to each man to recognize that moment and level of knowledge when he's ready to make what may be the most important decision of his life. Ideally, it will be made based on facts and authoritative opinions, not Uncle Joe's personal experience, and many decisions and actions described in this forum have demonstrated limited research, to the patients' regret. I.P. >"I've never made any attempt to explore your rationale or motivation." >"How peculiarly self-important of you to imagine that I might." > >Then on what do you base your criticism of them? I wasn't aware I had. Could you paste whatever it is you're referring to in the space below? >> "I've never made any attempt to explore your rationale or motivation." >> "How peculiarly self-important of you to imagine that I might." [quoted text clipped - 3 lines] > I wasn't aware I had. Could you paste whatever it is you're referring > to in the space below? OK. Here are some examples. 1. "The 'anecdote vs. stats' war you wage from time to time is a red herring [i.e., a fallacy in which an irrelevant topic is presented in order to divert attention from the original issue]". In fact, I remind people of the *fact* that statistics are infinitely more predictive than anecdotes only when I see indication that newbies making decisions don't understand that or are being told otherwise. I don't see how trying to protect people from their apparent lack of understanding the value of statistics is "waging a war", a fallacy, a diversion from the issue, or deliberately any of the above. 2. "How peculiarly self-important of you to imagine that I might ... [make] any attempt to explore your rationale or motivation." Making that distinction is not about self-importance; it's about protecting others from their lack of understanding of the predictive value of large scale statistics compared to anecdotes. 3. "On the anecdote vs stats issue your thinking has been consistently blinkered" I've never heard the term, so I Googled it. Apparently you still think it's "narrow-minded" to say that statistics are more predictive than anecdotes. Let me respond with an analogy from the Albuquerque Journal. It published a timely explanation, with diagrams, of the nature and cause of that night's lunar eclipse ... the earth's shadow darkening the moon. Soon a very articulate reader sent in an op-ed letter very earnest letter pointing out that this "earth's shadow nonsense" is just White Man's unproved folly, that science is just another opinion, that in fact eclipses are ... at which point she lost me in metaphysical Indian lore about "the gods of the heavens". Another example, less distinct because it's more complicated, but still illustrative of the difference between science and rhetoric: There's the headlines' man-made, man-reversible, catastrophic, imminent global warming, and there's the giant incontrovertible body of evidence presented in hundreds of pages of facts and references in two books which prove beyond any doubt the actual, hard, proved, scientific *facts* about global warming. The headline hype and the actual *facts* of GW are in different universes. There is such a thing as scientific knowledge, and our case the science involved is mathematics and the subset is statistics. Given reasonably valid data and sufficient sample size, it trumps anecdotes hands down in predicting outcomes. It wasn't karma or a bottle rocket that put man in orbit and on the moon; it was tens of thousands of men and computers applying a huge variety of scientific disciplines to turn the crank that got us there. Science, including mathematics, is not just white man's interpretation of nature; it is real and often valid, and we often know how valid it is. Rumsfeld's "Known Unknowns" statement is immediately crystal clear and self-evident to many disciplines, including science: " "There are known knowns ... things we know that we know; There are known unknowns ... things that we now know, we don't know. But there are also unknown unknowns ... things we do not know we don't know, And each year we discover a few more of those unknown unknowns." The value, and many of the shortcomings, of statistics as predictors fall into the first category, for those who understand them. 4. "I pass on the opportunity to try and understand why [you wage a war on anecdotal "evidence"]." How, then, can you say it's a deliberate attempt to divert attention from the topical issue? 5. "An entirely legitimate approach to getting to grips - even if you're unable to see it" See #3. 2 + 2 = 4, and Uncle Joe's RT-induced bloody stool tells you nothing of your odds of incurring same. 5. "You can be thankful, at least, that no one rubbished you for undertaking [your ADT SE] poll" I totally fail to fathom any rationale to that statement. 6. "that's not a courtesy you would be prepared to extend" What on earth are you basing that on? It's like me saying your horse is ugly ... without even knowing whether you have a horse. 7. "at least not without first airing your puerile mantra about 1 man's anecdote and another's outcome" See #3 and #5. "your answer sums up perfectly your tacit acknowledgment of the existence of a hinterland between stats and a collective forum anecdote" Would it help if I come right out and say it explicitly? OK: There's a large gray area between reliable, useful, predictive statistics and the personal outcomes of a few dudes. What does that change? "Whether it would be wise to reject the results of such a straw poll in favour of the broader research will depend upon various of our prejudices and fears." What's to "reject"? No one implied we should make tx choices based on a totally unscientific poll of some guys. It's prejudices and fears that we need to overcome, not succumb to, if our objective is to optimize our futures. Anecdotes feed our prejudices and fears without factual basis, while statistics shove them aside with facts. Put another way, while Uncle Bill's botched surgery may scare the hell out of us, it in no way implies we should avoid surgery, nor does Cousin Sam's 40-year survival after The Rutabega Diet imply it had a damned thing to do with his cure. It's when 50,000 guys live 40 years after treating their verified cancer with The Rutabega Diet that it *means* something to the 50,001st guy's decision. And why am I willing to spend so much time on this? Because recognition of the fact that peer-reviewed, large-scale PC statistics are an infinitely more valid tool than Uncle Joe's Diary for predicting the next guy's outcome is crucial to that next guy. i.e, I'm writing this for the next guy(s), not just you. Do you think Steve Tew would really base his Navy squadron's engine overhaul schedule on the longevity of a few buds' engines rather than the collective MTBF (mean time between failures) of hundreds or thousands of engines operating in a similar environment? I.P. I.P., I still don't think you are getting it yet. No one is rejecting the value of statistics. However, all statistics are comprised of anecdotal evidence by nature. Yes, there is an attempt to control the parameters of the population in each study group to eliminate unintended influences but if that was really possible then all studies hypothetically would be 100% pro or con. The study would pass or fail and we wouldn't need statistics. Statistics are nothing more than our best guess of possible outcomes produced by injecting a variable into the study group. Please forgive me if my analogy is imperfect as it's been 33 years since my statistic courses. Plus my dementia is affecting my recall. Also, I am not rosbif. He is much more eloquent than I am. From my point, I believe both of you are right for the most part. I do believe that you have a tendency to over critique and by doing so often miss the point. The point being that it is very difficult to find reliable statistics on the internet. There is so much garbage out there that people that haven't had the benefit of courses in statistics don't know good statistics from bad ones. There is a whole lot of marketing going on that has polluted the internet and made it difficult for average Joe to know what is fact or fiction. That's why they come to this forum in hopes of separating the meat from the shaft. Or what ever. Ron S. > I.P., > No one is rejecting the value of statistics. Many here have and do. > Also, I am not rosbif. He is much more eloquent than I am. I had to ask because of perceived similarities and some people using different I.D.s at home and work. > I do believe that you have a tendency to over critique Guilty as charged. Always have been, and am probably incapable of changing that now. > and by doing so often miss the point ... that it is very difficult to find > reliable statistics on > the internet. There is so much garbage out there that people that haven't [quoted text clipped - 3 lines] > fiction. That's why they come to this forum in hopes of separating the > meat from the shaft. Now we're in total agreement, as long as they don't, as so many do, ignore the Partin Tables in favor of Uncle Joe's Diary as some here espouse and advise. I.P. Thanks for your reply. I might come back to it later. First though, can you help with this? Earlier in this thread you said:- >There was no way I would base my future on any individual's > -- or small collection's thereof -- anecdotal experiences, > because they are meaningless in predicting what may > happen to the next guy. - and a few days later you popped this in:- >my poll of this forum nearly three years ago indicated that >an overwhelming majority of ADT pts have severe, >usually debatably devastating, SEs. ..and yet there is "no way" you would heed such a poll, because it would be "meaningless". Why conduct a meaningless poll? > Thanks for your reply. I might come back to it later. First though, > can you help with this? [quoted text clipped - 16 lines] > > Why conduct a meaningless poll? Here's a condensation of my initial poll request. Essentially, it was an attempt to shed more light, no matter how faint, on the subject and on my decision process. I'd not base a decision on an informal poll of this size (roughly 20 respondents); if most people did, or if a large scientific poll returned similar statistics, the ADT industry would probably all but dry up. If this poll had contradicted my research, it may have at least prompted me to do more research. " are there any new points ... on the side effects of [ADT]? [It had been discussed very little before this poll.] The list of effects and their commonality is daunting to people trying to decide whether to get [ADT] after RRP JUST IN CASE mets may crop up some day. I have no detectable mets, no PSA, negative surgical margins. My doc recommends early ADT just because I had Gleason 8 and seminal vesicle involvement. But the list of side effects and their frequency of occurrence [SNIPPED extensive ADT SE data] strongly implies a complete makeover of who I am, JUST IN CASE. Others' anecdotal experiences with these effects, or additional statistics or effects, would be of great help in making a decision." I.P. Hi I.P., After reading your reply to rosbif and my post,I still don't believe you see the contradictions in your statements. You say you wouldn't rely on a small collection of anecdotal evidence. You also state that if the poll was contradictory to your research then you would have done more research. Therefore we can conclude that that the side effects from ADT are quite severe in most cases. Therefore the only conclusion is that the ADT drug industry will be soon drying up. Your poll "was" helpful in your assessment of the effects of early ADT and consistent with your research. Now my only question is why in the hell did you try ADT for a month after all your research and anecdotal evidence was to the contrary? To sum up, your final statement of "Other anecdotal experiences with these effects, or additional statistics or effects, would be of great help in making a decision." It seems like you have come around to conventional thinking in your last statement contrary to all your previous explanations on the matter. Ron S. > Hi I.P., > After reading your reply to rosbif and my post,I still don't believe you > see the contradictions in your statements. You say you wouldn't rely on a > small collection of anecdotal evidence. You also state that if the poll > was contradictory to your research then you would have done more research. Sure, I see my contradiction in "one man's (or a few men's) anecdotal experience does not predict another's outcome" and "only valid statistics have predictive value". But I've also acknowledged the broad gray area between big formal studies and Uncle Joe's Diary. Certainly our forum's 20-man poll is just 20 one-man diaries, and should count far less -- probably/maybe infinitely less -- than VA statistics from 80,000 pts. But (a) I was just three weeks post-op when I polled the forum and (b) " doing more research" (than the significant research I had already done) and "choosing a treatment" are vastly different actions. My tirade against anecdotal evidence is expressly aimed at the newbies who say they are relying solely or predominantly on anecdotes in choosing treatment and at the old hands who promote same and, even less provably, say that their successful outcome *proves" the value of ADT. > Therefore we can conclude that that the side effects from ADT are quite > severe in most cases. Therefore the only conclusion is that the ADT drug > industry will be soon drying up. Your poll "was" helpful in your > assessment of the effects of early ADT and consistent with your research. I never suggested that any 20-man informal poll supports "Therefore we can conclude that that the side effects from ADT are quite severe in most cases", let alone "Therefore the only conclusion is that the ADT drug industry will be soon drying up". I merely said the poll (meaning by itself) *implies* ... yada yada. Was it helpful? Sure, out at some second or third decimal point, especially since it should appeal directly to the folks who say their diaries trump statistics and that the guys here have largely had minimal problems with ADT. > Now my only question is why in the hell did you try ADT for a month after > all your research and anecdotal evidence was to the contrary? I still can't understand any controversy in trying a short dose of ADT even if exhaustive professional research had shown overwhelmingly that ADT savages 90% of pts and adds only a (median) month to heartbeat. Such an experiment at my age bore virtually no risk but could have shown that I had no short-term SEs. IOW, that I had nothing to lose and a month or more to gain. Obviously, Uncle Joe's experience tells me zero about my odds of ADT SEs, but *my* ADT trial could tell me a great deal about *my* short-term ADT SEs. > To sum up, your final statement of "Other anecdotal experiences with these > effects, or additional statistics or effects, would be of great help in > making a decision." > It seems like you have come around to conventional thinking in your last > statement contrary to all your previous explanations on the matter. Just the opposite. That statement was written three weeks post-op, extremely early in my PC life and at the beginning, not the end, of my "anecdotal experience = oxymoron" mission, and its intended dominant appeal is for "additional statistics or effects" or at least a larger response to the poll. If "conventional thinking" is that "anecdotes trump statistics", I've failed, and must thus double my efforts to increase awareness of the fallacy in that paradigm. I.P. I'm sure we have about exhausted this thread but I didn't mean to say that anecdotal trumped statistics. You are putting words into my mouth. What I was saying is that your statement of anecdotal experiences along with valid statistical data would be of great help in making a decision. That doesn't necessarily mean that one is weighted more than the other. That would be up to the individual to make that distinction. As far as you test driving ADT. That was your decision. I was just surprised that you tried it given the literature that was out there at the time. Up until that time you seemed to be following a logical methodical process in valuation different treatment options. My interpretation of the literature ran contrary to your doctors suggestion and apparently to yours. But I'm not a trained medical professional so what do I know. Ron S. > I didn't mean to say that > anecdotal trumped statistics. You are putting words into my mouth. Not deliberately, I neither play nor brook word games. I.P. >> Thanks for your reply. I might come back to it later. First though, >> can you help with this? [quoted text clipped - 40 lines] >Others' anecdotal experiences with these effects, or additional >statistics or effects, would be of great help in making a decision." Unsurprisingly, I fully understand and support your appeal for anecdotal information, but if you read this para and contrast it with the totally dismissive and damning tone of your first para:- > There was no way I would base my future on any individual's > -- or small collection's thereof -- anecdotal experiences, > because they are meaningless in predicting what may > happen to the next guy. - even ignoring anecdotes' shortcomings as a predictor, your argument is locked in a contradiction of sentiment. "...would be of great help in making a decision." says it all. >Hello my now fellow travellers on the journey of prostate cancer. I have >joined the fraternity. [quoted text clipped - 37 lines] >8/2007 Biopsy: 1 core of 10 (40%)positive, Gleason 6, Stage T1, 38cc >prostate. John, Sorry you're in the club mate but welcome just the same. I'm a relative newbie here, but I have recently made it through RLRP and almost three months of rehab to date. In my mind if you opt for surgery, RLRP is the way to go. The key is the surgeon. In my mind, he must have a significant number of cases under his belt. He is an artist and the complexity of the procedure demands it. I found this ng to be the single most informative place to ask questions and get useful answers, as well as being pointed to reference tools that helped me learn about my plight. I wish you the best. SignaturePSA @ 45 yrs. = 4.7 02/06/2007 Biopsy 03/16/2007 G7(3+4),T1c RLRP 06/12/2007 G7(3+4),T2cN0M0 Neg margins PSA 7/16/2007 = <0.1 > My Urologist (Specialising in Cancer of Prostate) explained the options and > concluded that in his opinion he suggests a Robotic Radical Prostatectomy) [quoted text clipped - 3 lines] > shape of my prostate. He also is not in favour of radiation therapy in my > case due to possible later complication. John, I concur with SteveK that you should also consult with other PC experts before committing to surgery as your only option per your Uro. I think that the Uro is too biased to say radiation (external or brachy) is not an option. If after you talked to these other experts, and then decide with surgery, then you will feel better because then you know you made an INFORMED decision. On September 6, John Connor wrote: > Hello my now fellow travellers on the journey of prostate cancer. I have > joined the fraternity. Welcome to the club no one wishes to join. For authoritative and objective information, I recommend that you refer to the "Newly Diagnosed" section of the Prostate Cancer Research Institute (PCRI) at: http://prostate-cancer.org/education/education.html#newly_diagnosed Good luck! Regards, Steve J Really suggest getting a second opinion. A T1 stage and bone scan doesn't fit, in my opinion, and how unusually shaped can your P. be? Brachytherapy is typically done using a grid pattern. Please read my 8/31 post for another idea. Determined Occasionally the prostate sits in such a way as to eliminate brachytherapy as an option. You can always have a second opinion. Off the top of my head I don't remember the position of the prostate, but if it is sitting too close to something else they don't like to do it because of the danger of damaging another body part. It's hard to believe as we are told that body parts are here, here, here, and there, when in actuality they are sort of here and slightly over there. I wish you luck! Bev > Hello my now fellow travellers on the journey of prostate cancer. I have > joined the fraternity. [quoted text clipped - 37 lines] > 8/2007 Biopsy: 1 core of 10 (40%)positive, Gleason 6, Stage T1, 38cc > prostate. Hi John, I would like to welcome you as well to a large world-wide fraternity. 1 in 6 men are hit with this disease in their lifetime, thus it is very common. I'm sorry you had to join, but there is a lot of help available, as you have seen. With 1 core positive and the likely perception of your doctor that the cancer is contained in the prostate, surgery is a viable option. I didn't catch your age, but the younger you are, many doctors suggest surgery as a treatment as a slightly better hope for a "cure." At age 54, I chose the da Vinci robotic surgery because I wanted the deep, post surgery pathology of the prostate that only surgery can afford. I wanted to know better what I was up against for the rest of my life. As others have stated, the choice is completely yours. Take a deep breath and look at all the treatment options afforded to you in your area and according to your monetary capability. You may want at the following web site for an easy review of the various treatments and likely outcomes: http://www.prostate-cancer.com/ In addition, my web site (http://pca-info.blogspot.com) has information and links to many resources, including other online world- wide support groups. I wish you the best in your treatment decision! Let us on this forum know if there is anything we can do to help in terms of information or general questions. Kind regards, Idaho ------- Da Vinci Surgery July 31, 2007... 54 on surgery day PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate My awareness web site: http://pca-info.blogspot.com Hello again, John: And I'm sorry it turned out this way. I've been away for a few days, and have read most of what the others have written. When I was diagnosed, my urologist did two things that helped me a lot. First, he set me up with an appointment with a radiation oncologist so that I would hear an opinion about at least one other treatment. The second thing he did was to let me know that it was okay with him if I shopped around for a different surgeon -- though he would be willing and able to do an open procedure. I hope your uro is treating you the same way. A rad onc should be able to tell you about anything concerning shape issues -- it may be correct, but radiation imaging has come a long way. But with your numbers, anyway, you're probably a good candidate for the surgery. Good luck with it, and please keep us posted. --charlie Signature6/2006 PSA 5.2, DRE suspicious 7/2006 Biopsy: 2 of 10 positive, Gleason 7(3+4) 11/2006 LRP: Clear margins PSA < 0.01 on 1/2007, 3/2007, 6/2007 so far, so good ... |
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