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I had it a little easier. My urologist had me meet with his younger partner, a surgeon, as well as with a radiation oncologist. All of them steered me toward a quick surgery. There was no support, no other options, no emotional help. I only found out about the local PCa support group after I had radiation 18 months later. It would have been nice to talk to other patients before I made my decision.
I think the main problem is that doctors themselves don't know what to do about prostate cancer, especially early stage cancer like you were diagnosed with.
The New England Journal of Medicine posted a scenario on-line -- http://content.nejm.org/cgi/content/full/359/24/2605 -- describing someone like you requesting responses, and they were all over the map. Most of the doctors responding were those who provided treatment - they generally wanted to treat and surgery was the most recommended response. Like you, surveillance was a reasonable option as was radiation but there was no clear consensus.
I opted for a relatively new procedure called focal cryotherapy, and my brother who was concerned about his PSA had told his doctor about my experience. His doctor asked him for my information to give to one of his patients who was also a doctor, had been diagnosed with prostate cancer, and didn't like the treatment options that he had been presented with!
The urologist who diagnosed me with early stage PCa gave me American Cancer Society's Complete Guide To Prostate Cancer by Bostwick to read (is now fairly out of date). His practice offers Da Vinci surgery - he told me that I had to treat my cancer and recommended robotic surgery. I was leaning that way until I read what the risks were, especially after asking what the specific risks were at his practice compared to the big centers. I reacted badly to being told that he recommended a procedure that could add 10 more years to my life, but with a real risk of living from the procedure on impotent and/or incontinent for a cancer that might not even be a threat to my longevity. That's the basic conundrum.
I tried it on Active Surveillance, but it did not sit well with me. PSA is not that reliable a measure and conventional biopsy can miss higher grade cancer, and I worried about that and the possibility of disease progression. I feel that the local support group was really there to support the guys with more advanced PCa that they had to do something about, or for guys who had been treated and were having problems. It wasn't that they weren't there for me - it was that they are more oriented (by nature) to men with worse problems. Ironically, with PSA testing, the majority of men are being diagnosed with early stage disease like we were.
No one can decide FOR the PCa patient and there are no guaranteed outcomes regardless of what the decision is. Every so often, someone will pose the question 'What would you do?' That's not the point. In the end, the PCa patient will never be presented with a better opportunity to "suit yourself". The patient is who will have to live with the outcomes. Once ALL the options have been examined including 'not treating' and compared in terms of risks and potential benefits based on THE PATIENT'S values, only then should a decision be made.
In most cases, doctors tend to recommend the treatment that they provide: urologists - surgery, radiologists - radiation, etc. The problem is that this is all so complex and vague at the same time. There is no easy answer, so men have to do the best that they can to dig out information that seems the most relevant to them and ask a lot of pointed questions. Thank goodness for this site and some others. As so much of the info that Terry has assembled on this site indicates, there is little 'scientific' proof that any treatment provided a true cure. I found out about focal cryo reading on mentor experiences and felt it made the most sense to and for me. I like what's at http://www.prostate-cancer.org/ the Prostate Cancer Research Institute site as well.
In the current environment, the Internet is the best way to find out what your options are. Hopefully, some day general medical practice in both CA and US will do a much better job of educating men about prostate cancer, and that needs to start BEFORE blood is drawn for that first PSA test.
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?
