RE: Fw: Pollyanas and Geriatricide was Re: Celebrating my fifteen years

[Guest guest]

Hi Terry,        I would be interested in your full explanation of why you chose watchful waiting over surgery or radiation, if you would be willing to send it out or direct me to where I can read it.          Also, you bring up the interesting and painful point about treatment options around the world and the fact that not everyone, in fact, probably few, have access to the reputed best treatment centers in the world, including many people in the  U.S. where disparity in income and access to insurance is greater than in many countries around the world.  

      So we all must access our God-given medical insurance and care- our mindsets and spiritual resources, whether Pollyana-ish or otherwise, regardless of what outward treatment we chose.  

 

   Terry, I think you will find more background here.

http://en.wikipedia.org/wiki/Pollyanna

Pollyanna is a best-selling 1913 novel by Eleanor H. Porter that is now considered a classic of children's literature, with the title character's name becoming a popular term for someone with the same optimistic outlook

 

The novel's success brought the term " Pollyanna " (along with the adjective " pollyannaish " and the noun " Pollyannaism " ) into the language to describe someone who seems always to be able to find something to be " glad " about no matter what circumstances arise. It is sometimes used pejoratively, referring to someone whose optimism is excessive to the point of naïveté or refusing to accept the facts of an unfortunate situation. This pejorative use can be heard in the introduction of the 1930 and Ira Gershwin song, But Not For Me: " I never want to hear from any cheerful pollyannas/who tell me fate supplies a mate/that's all bananas. "

 

BOB

----- Forwarded Message -----

To: ProstateCancerSupport Sent: Sunday, August 14, 2011 5:14 AM

Subject: Pollyanas and Geriatricide was Re: Celebrating my fifteen years

 

,

 

Since polyanna [sp!] is not a term we use in Australia , or I think outside of the US , I had to look it up in a US dictionary. I found two meanings: 1. “ A person regarded as being foolishly or blindly optimistic.”

2. “A person who is constantly or excessively optimistic”  I guess it is better to be regarded as excessively optimistic (I’m not too keen on the ‘foolishly optimistic’ tag) than being charged with geriatricide as I was some years ago when suggesting that surgery for a man in his 70s with an ‘insignificant’ tumour diagnosis might not be making the best choice by opting for early surgery. Anyhow, I’ll store the Pollyanna [correct spelling] epithet with all the others thrown my way over the years.

 

Just a few points in your post (seems you may not have picked up all the relevant points from my story, but I won’t take up space by responding to all of them):

 

1. You are five years out of your diagnosis: I am 15 years out. At 5 years my PSA was 5.70 compared with the 7.20 at diagnosis and my free PSA was 27% (it went up to 48% at the next test. I had six PSA tests after my initial test. Perhaps you’ve had a similar number in your five years? I have continued to have PSA tests at appropriate intervals – mostly annually – as I guess you will in the company of all other men who have been diagnosed with prostate cancer no matter what their choice of therapy is. Perhaps sometime in 10 years time you may be faced with a rising PSA – I hope not, but you may. After all as the one and only truly long term study shows, there is a reported level of biochemical failure in men who have had surgery even 20 years after their operation.

 

2. You say “Urinary continence is fine although different with one less sphincter and so I have to be careful.”  This is delightfully vague, but presumably it means that, like the majority of men who have had surgery you occasionally leak? I don’t leak at all. You don’t mention climacturia (http://www.yananow.org/MinorSE.htm#climacturia) – are you in the minority of men who do not have this side effect after surgery? How about Peyronie’s and loss of size – again side effects which affect the majority of men who choose surgery. But maybe you’ve been lucky.

 

3.  You say “Erections are ok, probably close to where they would have been without surgery. So my quality of life has been largely unaffected.” Again a somewhat vague description. Again, there is a  time issue. Five years after my diagnosis there was no change at all in my erectile function and my quality of life has improved significantly.

 

4. You say “So I think I made the better choice. We are all different of course……..”  Indeed we are all different and I wonder what decision you would have made fifteen years ago if you had lived in South Africa and had no insurance or access to the top quality therapies that are available to US citizens with insurance – I assume you did have insurance?

 

I wrote up a full explanation as to why I did not choose the relatively high risks of surgery and radiation and would be happy to post that if you are anyone else was interested but this paragraph probably encapsulates the issue:

 

 “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.”  I didn’t at the time think I was foolishly optimistic in my view: my survival to date implies that I might merely have been optimistic or even realistic?

 

I look forward to your report on your condition in ten years time – hopefully you’ll be travelling well and will be able to post that to all of us.

 

 

All the best

Terry Herbert

in Melbourne Australia

Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 7: No treatment. Jun '07 PSA 42.0 - Bony Metastasis: Aug '07: Intermittent ADT: PSA 3.4 May '11

My site is at www.prostatecancerwatchfulwaiting.co.za

It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything.   Joyce Carey

 

 

[Guest guest]

I was going to attach this as a File, but

I see that good ole Yahoo have changed the configuration which makes finding

the Files more difficult, so here it is – sorry it is a long one:

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 Forums 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 www.yananow.net

In the course of a recent

discussion on a Forum recently I mentioned that my choice after diagnosis had

been Active Surveillance, 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. It 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 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 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.

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 available at http://www.yananow.net/Mentors/TerryH.htm

for anyone really interested.

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.org/StrangePlace/index.html

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Anders

Sent: Tuesday, 16 August 2011 4:07

AM

To:

ProstateCancerSupport

Subject: Re: Fw:

Pollyanas and Geriatricide was Re: Celebrating my

fifteen years

Hi Terry,

I would be interested in your full explanation of

why you chose watchful waiting over surgery or radiation, if you would be

willing to send it out or direct me to where I can read it.

Also, you bring up the interesting and painful

point about treatment options around the world and the fact that not everyone,

in fact, probably few, have access to the reputed best treatment centers in the

world, including many people in the U.S. where disparity in income and

access to insurance is greater than in many countries around the

world.

So we all must access our God-given medical

insurance and care- our mindsets and spiritual resources, whether Pollyana-ish

or otherwise, regardless of what outward treatment we chose.