Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 There has been a somewhat wide ranging discussion over the past few days on the PPML site under a number of headers which started when a poster asked if there was a comparison in QOL (Quality of Life) outcomes between PBT (Proton Beam Therapy) and RALP (Robotic Assisted Laparoscopic Surgery). There is no such comparison and a number of posters reject PBT on those grounds. I have always failed to be impressed by any argument against any specific form of treatment (or even non-treatment) purely in the grounds that there are no conclusive well-controlled or randomized studies that demonstrate the outcomes, whether we are talking about long term survival or side effects. My reason for this is a simple one – there are, to the best of my knowledge, NO conclusive well-controlled or randomized studies that provide these comparisons for ANY of the treatments (or non-treatments). To reject one form of therapy on these grounds ALONE, seems to me to be illogical and better grounds for rejection need to be developed to be convincing. Dr Gerry Chodak made the point during the discussion that there are studies on quality of life issues. It seems that these are not randomized prospective studies but retrospective studies. If that is the case, then their value is diminished – many people reject such studies as being likely to be biased. This is often especially true if such studies do not support their point of view. There is, perhaps more acceptance when retrospective studies confirm their views. Mike said that he is aware of only one randomized study that compares QOL (Quality Of Life) outcomes I am inclined to believe him because his depth of knowledge is immense, so it is of interest to see his summary of the study to which he refers at http://prostatecancerinfolink.net/treatment/first-line-localized/the-sanda-study/ where he concludes: <snip>The data provided in this study do not in any way offer the newly diagnosed patient the sort of perfect information that he can used to decide exactly which form of treatment is liable to give him, as an individual, the very best outcome after treatment……All that the data from this study can do is offer you some general guidance about what is reasonably expectable on average. The data are what they are. We wish better guidance could be offered, but it just isn’t available. <snip> So, if there are no conclusive well-controlled or randomized studies, How is a man facing a life changing decisions to gain any insight into potential outcomes? Is there any value in comparing the outcomes of men who have had treatment by way of anecdotal evidence? Does this offer ‘some general guidance about what is reasonably expectable on average.’? NO, say many people, including Steve Jordan who regularly tells newcomers to this site <snip> Do not rely upon anecdotes from other patients, no matter how interesting. <snip> Dr Chodak says, and I wouldn’t argue with him, <snip>…… reading isolated stories can be very biased. <snip> Yet, I have little doubt that Dr Chodak would agree that there is a value in support groups. Certainly Steve Jordan does as he says <snip> Personal contact with other patients can be very helpful. <snip> and we see the Deputy Chairman of Prostate Cancer Institute of Australia saying at a conference: <snip> The encouragement we give to individuals who are diagnosed with prostate cancer is to talk with other patients that have been through the same process…….. because the more involved their patients are and the more they talk to others with experience, they better off they are. <snip> What do these men talk about when they meet, if not the outcome of their choices? Can these be biased – yes they can. Is there any value in these exchanges – in my opinion there certainly is. Fore warned is fore armed – our greatest fears are those where we have little knowledge. But at the end of the day, no matter what conclusion a man comes to, based on what he has learned, whether this is from anecdotal evidence – the stories of his predecessors – or from studies no matter if they are regarded as flawed, he still has to find a qualified medical doctor to carry out the procedure he has chosen. There are no do-it-yourself prostatectomy kits; you can’t go down to Wal-Mart and buy a set of Brachytherapy needles; you can’t set up a proton beam radiation machine in your back yard. The final decision should be made based on the detailed analysis of the man’s disease and the most appropriate treatment prescribed. As Dr Strum says tirelessly “ASSESS STATUS BEFORE DETERMINING STRATEGY” . From all I have learned, in most cases diagnosed today, the strategies and the outcomes are likely to be indistinguishable from each other. All the best Prostate men need enlightening, not frightening Terry Herbert - diagnosed in 1996 and still going strong Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html Quote Link to comment Share on other sites More sharing options...
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