Thanks for the invitation to chip in, Tony. Let me say that in my many years of discussing (make that arguing in most cases) AS i have never seen such a polite and useful exchange of views - congratulaions all around.
Tony suggested that I post a contribution I made to another Forum when, in the course of a recent discussion, I received a personal mail Off List, asking a pertinent question: "Why did you wait? Why didn't you have the surgery?" I guessed there might be others who had the same question in mind, so chose to respond to the question on line, without identifying the person who mailed me. The person who mailed me apologized for being too forthright but I do not see that as an issue - I always wish people could say clearly what they think without creating a stir amongst those people who have differing views, but that is often far from the case. In any event, I am giving a forthright answer to the questions.
I set out below my response in full, but would like to add just a couple of points to address items raised on this thread.
1. Someone asked, or wondered aloud, if I would have made the same decision now as I did then. The simple answer is YES, but of course there are provisos because I doubt that I would have had the same diagnosis now as I did then. Gleason Scores have migrated upwards and although two pathologists had me at GS 5 (which would not have been classified as PCa today) and one had me as GS 6 and one as GS 7 - who knows what it would have been now? Anyone interested in reading about
the Gleason migration might like to go along to tinyurl.com/2jnpbu
There is also an interesting page on my website about
the interpretation of reports - that's at www.yananow.net/pathreport.htm
and a bit about
teh changes in Gleason grading announced in january this year at www.yananow.net/StrangePlace/forest.html#gleason
But if I had the same diagnosis now as then - Age 54: Stage T2b: PSA 7.2: Gleason 7: I would take the same path with even more confidence than I did then because there is so much mofre evidence now to support such a decision.
2. The second point is a remark about
the disease always progressing - a common assumption, but one that is unproven. All tumours can regress spontaneously - they are natural phenomena and in natre there is no stasis, only change. So tumours will progress or regress. This is not a popular subject - even less so than AS - and there are very few studies - for reasons that may be guessed at. There was a Norweigan study last year suggesting that there might be a lot more of this spontaneous regression about
than was first thought and we had quite an interesting discussion on my Forum at tinyurl.com/SponRegression
- there is a link to the NY times article about
the Norweigan study there,
But back to what I had to say:
The story of my journey is available at www.yananow.net/Mentors/TerryH.htm
for anyone really interested, but although it touches on the whys and wherefores of my decision making process, it does not go into detail and this post may put some meat on those bones. But.. please note, this sums up MY decision which suited ME. It may not be suitable for anyone else.
My mailer was also are kind enough to categorize me as informed and intelligent - I'll accept the latter accolade even though to do so might be regarded as 'putting tickets on myself" or even 'getting up myself' as we Aussies might say! But I certainly wasn't “informed” when I was diagnosed. I was in no different position to virtually every man who arrives at the starting point of the marathon that is a prostate cancer diagnosis - completely ignorant, but for the fact that prostate cancer was, well..... CANCER and CANCER killed you, as it was killing a very good friend of mine, diagnosed with prostate cancer some four years previously. (He died four months after I was diagnosed)
But my paradigm, my view of life created by my personal experiences, is such that I have a deep mistrust of authoritarian people making definitive announcements. So when a surgeon urologist, whose business it is to make money out of removing prostate glands, tells me that the 'golden standard' for treatment is surgery, and as soon as possible, I immediately think, "I'd like to check that out."
In this my reaction would be no different if a mechanic told me that the engine block in my car needed replacing - and he could do it at a good price. I'd get a second opinion. This desire to get more information is heightened as far as the medical profession because throughout my life every prediction and forecast made by doctors I have consulted for a variety of accidents and disease have been wrong. Good ole Dr Phil is inclined to say that the best predictor of future behaviour
is past behaviour
. So in my book, if the medical profession have consistently got it wrong in the past there may be a good chance that they have got it wrong now - and if they're going to make a bit of money out of me, that should also be take into account in case this makes their view biased.
Now, when I say these things, I am not saying that my attitude is right, or fair, or anything else. That is the way I think and it has stood ME in good stead over the past 60+ years that I have legally been regarded as a sentient being. I may not suit anyone else in the world and for that reason I have never suggested that anyone else should do what I have done in any aspect of life, let alone something as personal as prostate cancer.
So the first step in verifying the recommendation of the surgeon urologist for surgery within six weeks, failing which life expectancy might be 3 - 5 years was to see if there are any other views. And it was possible to establish even then, without the power of the Internet to deliver information in nanoseconds that there were many other views. The nurse at the Cancer Association, a doctor friend of ours, a work colleague, numerous magazine articles and studies pointed to the value of hastening slowly in making a decision, to the fact that in most cases prostate cancer was an indolent disease, that there were optional treatments that might be better than surgery. And so I started hunting in earnest, even learning how to use the Internet - a bold step indeed fourteen years ago
I won't bore you with chapter and verse about
what I found, what arguments I got into, how I assembled my views, beyond saying that I gained a clearer understanding of how wildly inaccurate some of the tests and scans were; that I saw people like Stamey saying that there was overtreatment, and Logothetis saying that what was being called prostate cancer wasn't really CANCER that killed you in most cases; and gained a better understanding of medians and ranges so I could understand the statistics on prostate cancer death and survival better. But at the end of that time I came to the conclusion that in MY SPECIFIC CASE with my options, there would probably be less risk in taking what was then referred to as the Watchful Waiting route than incurring a greater probability of serious side effects from any available treatment.
Why not surgery? Well, for starters it was clear even then that the more experience the surgeon had, the better the outcome was likely to be and that ideally the surgeon should have completed at least 150 - 250 successful procedures. But the best surgeon in Cape Town had done less than 100 surgeries at that time so would still be regarded as being on the learning curve. According to a doctor friend who had moved from South Africa to the USA all the best surgeons had also moved to more lucrative careers in other countries during the political turmoil in South Africa. So the chances of a good outcome were significantly lessened, to which I added a personal issue. All my scars from accidents and procedures are what are termed keloid scars (thick and wide). None of the doctors I consulted, all of whom had seen the very obvious scar on my chest from an old procedure, mentioned the fact that such scarring increases eightfold the chance of serious stricture developing after RP (Radical Prostatectomy). I also rummaged around and found a much longer list of other potential complications, apart from the erectile dysfunction and incontinence issues that naturally were in the mix. Peyronie's Disease, Climacturia (the leakage of urine at climax if you were able to gain an erection), loss of size and so on.
None of these concerns is a valid consideration if the true option is death. As I was told time and time again, "Dead men don't have erections either." But, as I saw it, the risks were not equal. Surgery entailed a high risk of immediate loss of quality of life at many levels, and a potential recovery of some of that quality over time, with no guarantee of 'cure' with a failure rate of over 25% in the first five years and a greater failure rate over time - even as late as 20 years.
Radiation never stood much of a chance when I discovered just how old and dangerous the machinery that was in use in South Africa really was. At that time, sanctions applied by the US and other countries had effectively stopped the importation of better and more accurate radiation devices - a position which has of course since been overcome. Brachytherapy was in it's infancy and producing some truly shocking results during the learning curve. Another good old pal developed bladder cancer during the time I was carrying out my enquiries and he told me, as has been verified by others, that if you think bladder incontinence is bad, bowel incontinence is even worse.
Watchful Waiting entailed a risk of unwanted developments over time - but how long? One study suggested that a man with a Gleason score of 5 face a 6% to 11% chance of dying from prostate cancer within 15 years of diagnosis depending on their age at diagnosis. That wasn't much of a risk and two pathologists had called my GS 5. But what if it was truly a GS 7 as the US pathologist had called it - why then there might be a 42% to 70% chance of dying within 15 years. Even those odds seemed better to ME (ever an optimist I saw that there was a better than 50% chance of living at least fifteen years) than the odds of severe damage in optional invasive therapies and in fact studies that have been done since this original study was carried out have demonstrated the original study probably overstated the mortality rates, which reinforces for me my original decision.
Finally, there was a reference in the mail to 'the cloud hanging over my head' in association with my Active Surveillance path. There is no such cloud, if this reference is to a Sword of Damocles type of situation - or at least no more than the cloud over the head of every man who has been diagnosed with prostate cancer. Do they not have regular PSA tests as I do, are they not at risk of treatment failure for 20 years or more? Is their risk greater or lesser than mine? Are their options for salvage treatment different to my options for primary treatment? If by making these points I am making anyone uncomfortable or causing anyone distress, I apologize, but as I said, a forthright question demands a forthright answer, I think.
On the other hand if the cloud referred to is the one that causes occasional showers and creates, as a result, beautiful rainbows, why then I'm happy I have it
As many men before me have said, the diagnosis of prostate cancer caused me to examine my life and what I wanted from however many years were left. The ones I have used to date have been very good and I wouldn't have missed them for quids. I look forward to as many more as I am allowed.
I know I probably shouldn't have to emphasize this again, but experience has taught me that what I have said may be misinterpreted, either deliberately or for some other reason. I am NOT advocating Active Surveillance for all men diagnosed with prostate cancer. I sincerely believe that it is an option that should be considered by all men with a suitable diagnosis, but accept fully that it is NOT the best choice for many. What I have expressed here are my PERSONAL views relating to my PERSONAL decision. Nothing more or less.
That's where I ended my looooong post. Just one final thought. If my choice has resulted in what might be termed 'treatment failure' am I in any worse position than the men who will have 'treatment failure' after their chosen invasive primary therapy?
Thanks for the invitation Tony - hope this isn't more than you wanted
modified to activate links...TC-LasVegas
Post Edited By Moderator (TC-LasVegas) : 9/9/2010 9:04:52 AM (GMT-6)