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Bill and Joe I think you are both quite correct about the lack of resources – or should I say, the lack of easily accessible resources, because, as Steve Z says, there is in fact an enormous mountain of information on the Internet. One problem is the 12.6 million sites that Google brings up if you put in the words %%bbCodeItem_2%%. Of course you do better if you put %%bbCodeItem_3%% into Google – Ahem! see who is on top of the 235,000 sites?? The problem is always how to sort the gold dust from the bull dust, if I may use an Australian expression.
Another problem is that many of the men diagnosed today simply do not known how to access the Internet. The median age for diagnosis in the USA is still in the mid-sixties and is higher in other countries. So half the men diagnosed are in their 70s and eighties and have no clue how to even use a PC. Their partners may know how to send e-mail (to the grandchildren) but that is often where cyberspace skills end. It is no coincidence that the vast majority of men who share their stories on this site or who contribute to Forums and Mailing Lists are in the younger side of the median.
This inability to access easily digestible information was the main reason why I wrote and printed the booklet that I have titled A Strange Place I took this title from a piece written by the late Robert Young who compared a prostate cancer diagnosis as being dropped, without your consent, into a new country with a language, customs, terrain, roads and rules which are all foreign. As he said, You are in a Strange Place, and it's frightening.
The problem of course is how to distribute this booklet to men who might benefit from it. Ideally this would be before they have a PSA test even, but certainly as soon as possible after they have been diagnosed. I was able to achieve this in Cape Town when I lived there. It was comparatively simple because there were only 13 practising urologists and all but one of them not only thought the booklet had some value but were prepared to pass them to their patients. I had planned to try and get copies to all the doctors in the city and surrounds, but left before I could get around to this.
I also made copies of the booklet available to all the men who joined our Support Group who might have come from other areas fro treatment in the hospital where we operated and provided copies to other hospitals in the region where we lived. The booklets have always been supplied free of charge with a suggestion that if the reader found the information of some use they might consider making a donation equivalent to the value of the information. In this way I always recovered enough to print more booklets.
When I advertised the re-print and update of the booklet last year, I received requests from three men running support groups for copies for their libraries and from two other men for copies to distribute to men joining their groups. One of these men is now printing a local version of the booklet, with my blessing, and the other is waiting for the approval of the committee running the group. Of course I also get regular requests from individuals as well. I usually print 100 at a time and so far have sent ou about 170 since November.
I am mentioning these points because I believe that each one of you could do something to provided newly diagnosed men with useful information. Perhaps you could speak to your local urologists or support groups? I am happy to supply copies of the booklet for you to distribute in your own locale or to confirm my permission for you to print copies locally.
There would be no cost for any of this, as long as my funds last – I could print and deliver 300 or 400 thanks to the generous donations made by many of you who donated - any one else who wants to contribute can do so by clicking on DONATE
Your points are well taken and your book is, of course, a very welcome and valuable resource. I found it to be very informative and helpful after my diagnosis.
Your offer of copies is interesting, and after I have traveled down this road a little further and have completed treatment, I intend to look into the possibility of having it available for newly diagnosed patients in my area. The mechanism for this is not clear in my mind yet, but I will put some thought to it and get back to you with the logistics.
Many thanks for your support and the offer of copies.
Yes, the PCRI site is a good one - but the point I was trying to make is that men who do not have access to a computer cannot access the PCRI site. How are they to find the information they need?
