Re: Active Surveillance - why did I wait?

[Guest guest]

Resent to ProstateCancerSupport

"Terry,

I think it would be a good idea that all men with a recent diagnosis of

prostate cancer read

why you decided to pursue Active Surveillance. Although I followed a

different path for my prostate cancer, my older brother chose

Active Surveillance, which I thought was a good choice for him.

For those with more troubling numbers (or those that feel they must

consider some type of treatment) I would also suggest they look at www.rcogpatients.com

for US treatment result comparisons. However,

due to multiple prostate cancer disease free measures, some of the

published results were adjusted according to a

s Hopkins ASTRO versus 0.2 ng/ml study that indicated ASTRO results

for their patients produced average 10 year +17% inflated results

(the 15 year data was much worse). The web site also

provides urinary, rectal and sexual side effect comparisons based on

published, and when not available, estimated results.

Carl "

Terry Herbert wrote:

********** The NewDx mailing list is intended for informational purposes only. Be aware that much of the material on this list represents the opinions and interpretations of other patients. Recommendations should NOT be regarded as professional advice. Conduct your own research and discuss your options with health care professionals involved in your care.

********** In the course of a recent discussion on another List when I mentioned that

my choice after diagnosis had been Active Surveillance, received a mail Off

List, asking a pertinent question: <snip> Why did you wait? Why didn't you

have the surgery? <snip> 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 gving a forthright answer to the questions. The story of my journey is available at

http://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.

All the best Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at

http://www.yananow.net/StrangePlace/index.html =-=-=-=-=-=-=

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http://www.ustoo.org

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