WHY I DID NOT CHOOSE SURGERY OR ANY OTHER TREATMENT

Written in 2010.

When my PSA was 7.2 in 1996 and I was 54, I was diagnosed with a Gleason 3+4=7, T2b prostate cancer. After thoroughly investigating my options, I decided not to have immediate aggressive and invasive therapy and instead pursue a path that was called Watchful Waiting then and is more commonly referred to as Active Surveillance now.

In the 14 years that have followed my diagnosis I have learned something about this complex disease and have participated regularly in discussions on a number of Web Froums and Mailing Lists. In 1999 I was responsible for setting up a website to help the newly diagnosed men in their efforts to untangle the web of information. That site (a strictly non-commercial one) is YANA - You Are Not Alone Now and this pge is part of that site.

I mentioned, in the course of a recent discussion on a Forum, that my choice after diagnosis had been Active Surveillance. In response 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 posted this reply on Line. There may be some people on this site who might also find my reasoning of some interest.

The person who mailed me was 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 over-treatment, 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. I was living in Cape Town, South Africa at the time and the best surgeon in Cape Town had done less than 100 surgeries then. So he 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 USA 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. 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.

There was a reference in the mail that was sent to me referring 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.

The story of my journey to date is here for anyone really interested.