What We Talk About In The CSN Prostate Cancer Forum

mrspjd said:

radomized clinical trials
First, it is important to state that this post is in no way meant to confer judgment upon anyone’s decision to opt out of, or to not enroll in, any clinical trial, be it randomized or other. That is truly an individual & personal decision. However, it is important to understand how critical randomized trials are in the medical/scientific community for the rest of us. Research data gleaned from such trials take us forward into the future with new trials that build on previous ones. I’m in no way suggesting that humans should be used as mice or experimented upon but, data sources have to start somewhere, especially after significant research results have been attained from other animal species.

Hats off to the brave men and women who have boldly & bravely elected to participate in randomized clinical trials because they are the ones that pave the way for better/newer successful treatments for the rest of us. And in particular, thanks to those men (some of whom have posted on this discussion forum) who have volunteered to participate in randomized clinical PCa trials, not knowing whether they were receiving the “real” treatment or the “placebo” treatment. IMHO, they are the real unsung heroes of the PCa world.

ob66 said:

Kongoisms and the like
The PCa network is one of a number I am on. Others deal with grandchildren activities and my alma mater in sports. But I must admit a couple of things. You tweak my curiosity maximally. Despite your denial, your posts are so lengthy and authoritative such that I am convinced you are either appointed or a self annointed board moderator. One cannot post with such certainty unless there is a valid background, and you do it in the areas that pertain to your PCa as well as a multitude more (your range or scope is overwhelming). If you are not a PCa specialist, you are close. Secondly, you do not seem to have been involved with PCa for that long, so your knowledge is over the top for a limited time period. And thirdly, and that which we all appreciate, you seem to respond empathetically and at length to all new posters, consuming a lot of your energy and time. I look forward to meeting you some day were our paths to cross in SoCal. In the meantime the "mystery Kongo" is fun along with being informative. Maybe an honorary degree on the board is in order. Cheers and many thanks, Bob

Kongo said:

Ira
You're spot on, Ira, when you indicate that the people posting are not statistically representative of prostate cancer patients or someone else as many of these posts are from wives, siblings, children, or friends of PCa patients. I would also opine that the vast majority of cancer patients never post on a forum such as this and that most men pretty much do what their doctor's tell them to do. I believe those who find their way to these types of forums are seeking additional knowledge or perhaps aren't satisfied with their doctor's suggestions on treatment. Others are seeking confirmation of decision choices, or are seeking opinions based on the experience of others regarding side effects and recovery from treatment courses.

I do think that if asked, most of the medical "experts" would address their patients questions. Given the dynamics in one-on-one situations with our doctors, however, I suspect that many patients either forget their questions until after their appointment or something that was said in their meeting prompts a follow-on question they only thought of later.

In any event, I'm grateful to the sponsors of these forums as I believe that they are a great resource for those seeking information, support, and sympathy.

K