The more things change, the more they stay the same...

[Guest guest]

I was rummaging in the messy lump of electronic files

which passes for a system looking fort a study and came across an exchange from

2006 on one of the now defunct lists where the poster took me to task, yet

again for posting my lunatic idea that there were some diagnoses where

immediate invasive treatment was not essential.

This is an edited version of the exchange:

Poster: You've always been a gadfly, challenging what

you believe to be the status quo in CaP research and therapy. I do not

understand your years-long polemics, attempting to convince newbies (and not so

newbies) that watchful waiting was , and remains, the approved solution. In

my opinion, you may have done more harm than good in presenting the

newly-diagnosed with the Niverna of doing nothing for some period of time. In

the computer world, we have individuals we call " trolls, " viz., those

who love to stir up controversy just for the sake of eliciting controversy. I

have to believe that you are, indeed, a CaP troll.

Terry Herbert: A troll, eh? Well I suppose it is

somewhat better than some of the others I was called back in those bad days

when there was no legitimate support at all for the concept of not having

immediate conventional treatment. Back then it was inferred that I had sexual

congress with my mother and that I was a geriatricide amongst other insults

from those who declined to consider any view other than their own. Fortunately

for those men whose diagnosis is one that can be considered an insignificant

tumour there is a growing tide amongst even the staid prostate cancer centres

like MD and s Hopkins to counsel those men against rushing into

unnecessary treatment.

I thought we had got over these issues by now with

the wealth of evidence that Active Surveillance is an appropriate choice for

some, but not all men. As I found out, when posting on another Forum recently,

that ain’t necessarily so. There are still many people around who will

not accept the fact that some variations of prostate cancer are indolent

diseases that are unlikely to pose a threat for many years, if ever.

All the best

Prostate men need enlightening, not frightening

Terry Herbert the Troll - diagnosed in 1996 and still

going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

[Guest guest]

Even the non-indolent disease can be tamped down, and we all die

from something even though it might be labeled natural causes. Voltaire once

said if you are devoured by a hungry lion or a thousand rats you are still

devoured. I am less worried about dying than having my quality of life ripped

away. I have had PC for 11 years. I am 62. My PSA recently went up to 2000,

yeah, 2000. Last time I checked it was 14 six years ago. I am certainly not

recommending my casual non status quo style to anyone, particularly the younger

men who are scared as hell after finding out they have cancer. It threw me into

a panic too. I recently had Fermagon from a Uro, I do not recommend Uros, they

cut and go home, that's their job pure and simple. Incontinence and or

impotence is also important for many men to avoid for their lives to have

meaning and quality. So this is an age relative disease. After the Fermagon my

PSA dropped to 21 in twenty eight days, then with another injection in dropped

to 3. Do I still have cancer? Of course. I also have heart failure and it seems

odd to me to feel better as to which ailment may kill me as I know I am going

to die from something no matter what I do. At least the bone pain is gone for me

for awhile. Keep up the good work Terry. Keep giving people another way to look

at the problems of PC as there are no magic bullets, but there are different

perspective on this problem we share on this list. As a fellow on another prostate

group, Henry , use to say " We are all an experiment of one. " He

told his doctor to screw himself and started on testosterone, which is not recommended

by me by the way. Some have tried this at it caused major complications. However,

he is 72 and like to run so he give his own method a shot. It worked for him. He

was an engineer by the way who once worked on the first automatic bowling pin

setting machine for those who remember old time bowling alleys. Cool. He was

lucky as it might kill someone else. His daughter was 38 and died of breast

cancer. They commiserated and cried together before she died and she said F...

what everyone tells you dad from mom to the doctors , do what feel right for

you and enjoy life. He did. So my suggestion is don't panic. There are no hard

and fast rules or cures here. Do your best. Keep calm before you get talked/rushed

into a particular treatment. (Eleven years ago my Uro said I should have

surgery in two weeks or else. He might be dead now for all I know.) You have

time to think things over. If you go for a particular treatment don't second

guess yourself, it isn't good for you. There is always hope. Cheers. Garry

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Terry

Herbert

Sent: Sunday, September 12, 2010 11:50 PM

To: 'Prostate Problems Mailing LIst';

ProstateCancerSupport ; newdx@...;

ww@...

Subject: The more things change, the more they

stay the same...

I was

rummaging in the messy lump of electronic files which passes for a system

looking fort a study and came across an exchange from 2006 on one of the now

defunct lists where the poster took me to task, yet again for posting my

lunatic idea that there were some diagnoses where immediate invasive treatment

was not essential.

This is an

edited version of the exchange:

Poster:

You've always been a gadfly, challenging what you believe to be the status quo

in CaP research and therapy. I do not understand your years-long polemics,

attempting to convince newbies (and not so newbies) that watchful waiting was ,

and remains, the approved solution. In my opinion, you may have done more

harm than good in presenting the newly-diagnosed with the Niverna of doing

nothing for some period of time. In the computer world, we have individuals we

call " trolls, " viz., those who love to stir up controversy just for

the sake of eliciting controversy. I have to believe that you are, indeed, a

CaP troll.

Terry

Herbert: A troll, eh? Well I suppose it is somewhat better than some of the

others I was called back in those bad days when there was no legitimate support

at all for the concept of not having immediate conventional treatment. Back

then it was inferred that I had sexual congress with my mother and that I was a

geriatricide amongst other insults from those who declined to consider any view

other than their own. Fortunately for those men whose diagnosis is one that can

be considered an insignificant tumour there is a growing tide amongst even the

staid prostate cancer centres like MD and s Hopkins to counsel

those men against rushing into unnecessary treatment.

I thought

we had got over these issues by now with the wealth of evidence that Active

Surveillance is an appropriate choice for some, but not all men. As I found

out, when posting on another Forum recently, that ain’t necessarily so.

There are still many people around who will not accept the fact that some variations

of prostate cancer are indolent diseases that are unlikely to pose a threat for

many years, if ever.

All the

best

Prostate

men need enlightening, not frightening

Terry

Herbert the Troll - diagnosed in 1996 and still going strong

Read A

Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

[Guest guest]

Re: The more things change, the more they stay the same...

>

> Terry and Lenny,

>

> I have made a new educational video on Active surveillance and welcome

> your

> feedback.

>

>

>

>

> Gerald Chodak, M.D.

>

>