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You're right, this site is the best place I've found to get the real information on how people are doing with their treatment, Terry Herbert is doing a great service by running this site. You're also right about many of the websites pushing their services and I try to take that into consideration when I read them. But something from the urologists website I was refered to rings pretty close to what that website said and I'll quote it below.
Quote from URO website
Generally, PSA values less than 10, prostate cancer volume less than 6 cubic cm and Gleason's score of less than 6 are all favorable prognostic indicators, suggesting that a radical prostatectomy may yield a cure. However, one third to one half of patients who have undergone radical prostatectomy will have a positive PSA 1-3 years following surgery, indicating that they have not been cured of their underlying disease.
To be honest that quote from his website caused me to start searching the web to find out as much as I can about the different treatments and what to expect. And I might possibly reflect the view of many others in the fact it scares me and worries me every moment of my life.
Terry Herbert mentioned in one of his posts about lurkers in forums that read to get information but for one reason or another do not post. That was me for a long time because I was always afraid of sharing my thoughts, but when Joe 67 requested help dealing with his mental issues that brought me out because I wanted to comfort him if I could. I had read all of his posts and his story and wanted to help him anyway I could, even if it was only a friendly message from a Stranger (why i'm the stranger by the way) to help relieve some of his anxiety at the time.
So I'll try my best to take your advice and watch for sites that are simply pushing their treatment, and thanks for your reply.
G'day Stranger - and thank you (and the others) for the kind words.
As Lenny says, I do often quote the late Aubrey Pilgrim's dictum “The Golden Rule of prostate cancer is that there are No Rules.” - that’s what makes any decision so darned difficult – the lack of certainty. (Incidentally the booklet I wrote “A Strange Place” is on the site at http://www.yananow.net/StrangePlace/index.html )
You can reduce the uncertainty factor to a certain degree by looking carefully at the background of information that you come across – there is an adage that goes back to Roman times cui bonis meaning who benefits . If the person supplying the information is someone who will benefit from the way it is presented, why there’s another Roman phrase that applies caveat emptor – let the buyer beware In this case the man presenting the information is Larry Clapp, a man with a reputation that is not the best. His background was investigated thoroughly by a man on the Internet some years ago and much of what he claimed as to his background was said to be incorrect.
But leaving that aside, what you simply MUST do in evaluating any evidence is to see how relevant it is to the current situation. The disease we call prostate cancer now is not the same as the disease diagnosed prior to the use of PSA – then it was about 80% late stage disease: now it is about 80% (or more) early stage disease. Naturally there is a greater failure rate in late stage disease than in early stage disease.
The first reference to a 34.9% failure rate in five years was published in 1996 – that’s 12 years ago – involving men treated from 1985 to 1992. Were the men in 1985 diagnosed through the use of PSA tests? What was their staging and Gleason Score? – as you know the chances of failure are much higher in a man with a Gleason Score of 8 compared with a man with a Gleason Score of 6. I’d also like to see the study in which Grace L. Lu-Yao is said to refer to this antique failure rate The last study I saw attributed to her – about four months ago, from memory, was one in which she reiterated her view that there was too much treatment of diseases that did not require treatment.
The second study quoted refers to 1600 patients operated on by Dr Patrick Walsh in 15 years prior to 1997 – that’s going back to 1982 by my reckoning - over a quarter of a century. I don’t know how many men Walsh would have operated on in that time, but it is certainly likely to be more than 100 men per annum. And again there is no reference to stage or Gleason – so IF the quotation is correct, then it seems likely that there was some selection of men from within the total group operated on – perhaps to make a point?
Finally, of course, we need to know how ‘failure’ is defined in these alleged studies. One recent publication suggested there were over 200 definitions of failure!
I’m not sure that this is much help and I have to dash off right now. But.. I’ll be back…
You're welcome for the kind words and you deserve everyone of them. This site provides a great service for the people researching prostate cancer. It gives each one of us a look inside the lives of real people fighting the disease which is so important in your search for what will happen to you. The fact the mentor stories includes such a wide range of cases allows everyone to find something to relate to. I can't tell you how important that was to me and I'm sure each person that finds this site feels the same way.
Thank you for the information about Larry Clapp, your answer is exactly why I posted the quote from his site on this forum. I consider myself a person with a fair understanding of this disease and it's treatments because I've been researching it for quite a while but that only gives me an overall view of the disease and it's treatments, not the background you have where you can pull up stored knowledge from years of dealing with it and the research you've done. The fact is that quote from his website scared me a lot, but your answer put it in a different perspective and that's what I needed. But I also put a quote from the UROs website I was referred to which states similar odds, albeit better odds than the one quoted on Larry Clapps website, but the quote from the UROs website also scared me. And I guess that's the way it is, after all it's prostate cancer we're talking about. We all want the magic bullet but it simply isn't there, so we're left with choices we don't want to make.
I have read your personal story on yananow and your other website and follow your case with a great deal of personal interest. I have so much to say about your personal story that it can't be put here or this reply would be huge, so I'll just say the courage and determination you've shown is extremely inspiring and shows that active treatment is not the only choice. Of course I realize for some men active treatment is the only choice but like you've pointed out in your story on yananow and your personal site it's not the only choice that should be considered. And like you've said each time you speak of it, it's not an easy path to follow and not the correct choice for many men. So having said that I'll finish this paragraph with one last thought.
You're my hero.
I read the Strange Places link, thanks for posting it. I've been reading this site for quite a while and have scoured all over it looking for information. I can't tell you how many mentor stories I've read.
Your comments about making sure what you find is relevant to the current situation was well taken and something I forget to do sometimes, but knowing and evaluating the past is important because the past is always nipping away at the heals of the future. By that I mean the UROs website I was refered to quotes odds that aren't that far from the ones on Larry Clapps website, a 33 to 50 percent failure rate for PSAs less than 10. Of course his information might be older too since it doesn't have any dates associated with it.
But none the less, thanks so much for your reply it was both informative and comforting. Keep up the good work on yannow and prostatecancerwatchfulwaiting.
