RE: [NewDx] Active Surveillance Conference

[Guest guest]

Well, HELLO ROGER! We discussed this very subject back on July 7th, 2009! I see you continue in your journey as you did back then, and I wish you well. As you can read on my website www.theprostateadvocate.com, I still continue to manage my recurring cancer for the past 15 of my 19 years since diagnosis and initial treatment in 1992. I have the deepest respect for the expertise of Dr. Myers and other Medical Oncologists who have dedicated many years of their practices to specializing in research and treatment of our insidious men’s disease. No one is perfect, and I expect even Dr. Myers may provide a miss-quote at times, but he usually becomes aware and follows up correcting such events if they occur. Would that all physicians provided we patients with as much educational information to help empower ourselves as these physicians have. Chuck Always as close as the other end of your computer to help address any prostate cancer concerns. " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack - Prostate Cancer Advocate/Activist Email: maack1@... PCa Help: " Observations " http://www.theprostateadvocate.com From: Schaaf Sent: Thursday, December 08, 2011 8:49 PMTo: Chuck MaackCc: ProstateCancerSupport ; ww@...; 'NewDx'Subject: Re: [NewDx] Active Surveillance Conference Possibly what is occurring is that many in the PCa medical community are beginning to recognize that extensive and intrusive treatment of this disease is saving very few if any lives. And those that are saved come at a very high price in QOL for those who are treated either unnecessaryly (my new word) or treating who in spite of the full monte of treatment(s) still die from the disease. As Ballentine of s Hopkins (a compatriot of Walsh) is quoted to saying: " 300 men over the age of 65 must be treated to save a single life at 10 years. Some 15 years ago, Dr. Stamey of Stanford suggested that this disease, especially with the advent of PSA screening was the most overdiagnosed and treated disease in the country. For some 4 years in a row, beginning in 1986 I attended the PCRI Conference in LA. For the first 2 of those years, nary a word was mentioned by Presenters of WW or AS. By the third year ist managed to be spoken of in hushed tones by some of them. The final year that I attended was 2009, it seemed to be on the agendas of all Presenters. Perhaps realty is beginning to catch up with the business of PCa.,,,,to coin a phrase from the book " The Big Scare,,,the business of Prostate Cancer. This book along with " Invasion of the Prostate Snatchers by Dr. Scholz) should be read by everyone newly diagnosed(and all others) with this disease before any decisions are made. I myself was diagnosed over 6 years ago with a Gleason score of 4 plus 5 by Kaiser,,,confirmed by Stanford,,,PSA of 5.5, negative DRE. I declined all treatments,,,,subsequently when I exited Kaiser and went straight Medicare with a supplemental, I did send my biopsy off to Bostwick where they suggested a 4 plus 3,,,,subsequently confirmed by UCSF. I did visit Loma ,,,saw by Dr. Rossi regarding Proton Beam, stopped by Stanford a few times, had several MRSI's at UCSF,,,Gadolinium and Pyruvate studies and color dopplers and when all was said and done and after very extensive reading and research chose the path that I currently on. Now 6 years later, I am doing well and intend to forgo any treatment until I see the " whites of its eyes " ,,,,hoping and trusting that I will be one of those 5 out of 6 diagnosed with the disease who will never die from a PCa specific death,,,,and live a very high QOL, and of course believing that there are treatments forthcoming (Abiraterone and MDV 3100 are recent examples) that will save the day for me if I should ever by one of those unfortunate 1 out of 7. And not be one of those treated extensively with a severely compromised QOL for my few remaining years,,,,I am now 71, or worse yet be treated to the Full Monte of treatments from RP to RT to ADT to Chemo,,,,etc. and still die from the disease (32,000 men die in this country each year,,,,results may vary as posted numbers are all over the place) and the vast majority of those who do die a PCa specific death did submit to and experience the full quiver of medical treatments to no avail. I am always reminded when discussing this disease and the assembly line that men find themselves on when first diagnosed, of the old Kingston Trio song " MTA " . Charlie boarded that train in Boston, had not a nickel to pay his toll to get off the train, and was forced to ride this train forever and never to return.Did he ever return, No he never returned And his fate is still unlearn'd He may ride forever 'neath the streets of Boston He's the man who never returned I have no idea what Dr. Myers motives are (even though I sat next to him at a dinner 2 weeks ago and spoke to him extensively) but I think that he is suggesting that G 6's are not worth wasting time, money and QOL on,,,,and I suspect that he is beginning to believe that perhaps local intrusive RT's and RP's are not saving many lives for higher grade cancers either,,,,although he remains in the firmly in the systemic treatment camp for advanced disease and perhaps RT for focalized metastatic tumors if the total identified is under a count of 5. This is only my opinion of what I think he is suggesting,,,,I do not wish to put words in his mouth,,,,although it is well known that there are Physicians who specialize in this disease who are beginning to suggest that G6's are not fully worthy of being called cancer. When does the ground war begin? Schaaf