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Re: Re: Last week's "New" Prostate Cancer InfoLink
Thank you to both TV and Bill. I really appreciate your offers of help, but in fact the load is not too great at present. Two or three hours a day usually covers it all and it would be difficult to farm out any of this work.
What usually gives me the PCa overload is a combination of events. In this case one of the issues is continuous problems with my computer that seem to possibly be associated with a virus attack. I hav done a couple of sweeps and my protection says all is well, but it is very annoying to have to re-do work; re-boot the computer etc. I guess I will have to get my machine around to someone to have a look at; but who??
The other big issues was the continuous debate on screening which is also very depressing to me because I have seen it repeated so often for so long and nothing seems to advance. The general conclusion, once the extreme views have been sorted out, is that screening in itself is not the problem. It is what follows screening; the lack of good advice for men; the apparently incompetent members of the medical profession; the inappropriate treatment choices; the harm done to men who will never be at risk.
But nothing is ever done to address these issues. Instead the advocate groups whine because there is less money spent on prostate cancer research than there is on breast cancer research; that more money should be shoveled into more research despite the lack of advance in the War On Cancer over the last decades; never a word about spending some of these vast funds on education; on making sure that what knowledge there is about this disease is available to all who need it. I am glad that occasionally men mail me to say they have fond what I have done with this site to be useful, but it should not be up to amateurs like me to provide information. It should be provided by the doctors who examine the men and it is not.
And then there are the people who mail me with specific questions away from the Forum. I do not mind spending time answering their questions and in trying to help them to information. I do not mind repeating the information, as I have hundreds of times, because so many men have the same concerns and worries. But what does get to me at times is when I give information, and links to more information which is appropriate and get further questions which clearly show that the enquirer cannot even be bothered to read what I have said or guided them to. I feel a bit ashamed about this because I know that often they are in a state of panic, with no support from their doctors, so I bite my tongue (figuratively speaking) and try and find other words, in case they haven’t understood the first set.
I will not be planning to go away too soon, at least not while some 1,000 men a day are visiting the site and while some find it useful, but again my thanks for your kind words
Re: Re: Re: Last week's "New" Prostate Cancer InfoLink
Hey Terry,
I hear you loud and clear. When my Uroligist sat down with me in March and gave me the news that I had PCa, he wrote down the treatment options on a 2" x 2" bright yellow post-it note and handed it to me. He noted my PSA, Gleason score and did not inform of the "T" grading, but rather said it was "low grade and slow growing". He organized a pelvic CT scan and arranged an appointment a few days after the scan at which he wanted my decision on treatment. That was it! He did not provide me with any reading material, no support group leads and absolutely no compassion. When I asked him what he would do with a diagnosis like mine given the Gleason score he offered no opinion.
Before I met with him, I had a sneaking suspicion that PCa would be the diagniosis and was menatlly prepared for his answer. Many aren't and the news can come as a huge blow, clouding all semblance of rationality and ability to obtain resources and information on which to base a treatment decision two weeks later. Fortunately, I was very comfortable with the internet and quickly found a support group near my home where I obtained some excellent literature to read. Additionally, I found YANA which I am very grateful for. Many of the questions I had were answered on this forum or from leads and links provided on YANA. By the time I met with him after the CT scan, I had already decided on what direction I was going and asked for a surgical consult. I had to provide the surgeon's phone number to him as his desk was a filing nightmare.
I believe doctors are highly trained in their chosen field but many lack in patient handling skills and all that goes with that. I agree that funds need to be spent to help patients get the information they deserve to make informative decisions about their treatment, and this material should be available immediately after diagnosis so that when the shock of hearing you have PCa subsides you have information to read and absorb with your loved ones.
Never underestimate the value of your site Terry. And, there is help at hand when and if you need it.
