I was diagnosed with advanced prostate cancer in March, 1999. Until that day, I didn't even know what a prostate was, but I immediately became a highly motivated student of the subject. I received advice that I didn't believe from the very beginning. I started making decisions based on intuition and, at the same time, studying relevant material. Like most patients I began with the material in the local library but soon graduated to published, peer reviewed studies.
My wife was able to obtain a number of papers for me through her work in health care and I found the UMASS Medical School and Stony Brook Hospital libraries very cooperative in allowing me access to their stacks and copying machines. My best and most informative information source, however, was a CR4-like network operated by a fellow patient named Don Cooley. He had several groups you could join and made a lot of information (including my own book) available on line, at no cost.
Don had over 2000 participants and I received an average of 5 to 10 messages a day from people in the group. If you can imagine the abilities of that many interested patients brought to one forum you may be able to appreciate the value of that net. They didn't all have great technical depth, but some were doctors and many had done extensive independent study. There were the usual crackpots and comedians, but that just lightened up a gloomy subject. The thoughts of so many highly focused individuals, though, were a gold mine of leads, concepts, experiences and data. I don't think I'm exaggerating to say that I may owe my life to information obtained as a result of participation in that group.
Last year, Don reached an age at which he didn't wish to continue the stress of maintaining that network and he closed it down. That left a gaping hole in my life and put me back on my own for continued research. It happened at a bad time for me, because my cancer was about to become hormone refractory and I've had to dig a lot harder for the information I need to stay alive. I still hear from a few people around the world who seemed to believe in my approaches and want to stay in touch so I'm glad to keep them advised, but I do miss the Cooley network.
After seeing the response to the series that Moose presented, it occurred to me that there might be enough interest in prostate cancer within CR4 to keep a small exchange going. If so, I would be glad to contribute anything I can in response to queries here. If not, that's OK too.
Best regards.
DickL