Re: 14 years today......

[Guest guest]

Terry,

Congratulations!

Thanks for all you've done to help countless people through their moment of dispair. The information that you have painstakingly gathered and made available to thousands will, without doubt, help thousands more in the future.

Goodluck in the future!

Rick

Diagnosed: March 2007, Age 52, T1c, PSA: 5.2, Gleason: 6, Treatment choice: DaVinci Robotic, PSA since surgery: undetectable

To: Prostate Problems Mailing LIst ; ProstateCancerSupport ; newdx@...; ww@...Sent: Mon, August 16, 2010 3:35:47 AMSubject: 14 years today......

I got my latest PSA result on Friday, 14 years to the day from the date of my biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I get the next shot next week, the third shot may be unnecessary. No new side effects yet, so I’ll hold thumbs on that.

I’m not a great one for retrospective second guessing, so on anniversaries like this I never start on the “what if’s†, but I do look back on what has happened over the years and wonder how many of the things we (my good lady and I) have done in these past 14 years we would actually have go around to doing without the impetus of a life-threatening disease. Would we still be saying “We MUST…..……one of these days.†Certainly the dire forecasts of my early demise helped us focus on what was important now – as a good friend said “This is not a rehearsal.†, and so we have been to places we had wanted to see and travelled far and wide. We’ve had some great experiences and have met people we would otherwise never have got to know. I know that the newly diagnosed man – and his loved ones – may find it difficult to see any

good in his diagnosis, but I am here to say that for most of us, it ends up as a positive experience simply because we can establish more clearly the value of being alive.

The other aspect of our shared disease that I contemplated was how little things have really changed in the past 14 years. Of course there have been what appear to be significant improvements in the two mainstay therapies – surgery and radiation, with new, and very expensive machinery being designed and brought into use. But ……there are still no studies that demonstrate that using a robot assisted surgical procedure is in fact a better way to go than the old manual open surgery; that the high doses of radiation delivered more accurately and more quickly will in the long run have a better outcome than the old, smaller fractionated dose protocols; that proton beam radiation is better or worse or the same as photon beam radiation – in fact in some quarters this is regarded as an experimental therapy despite the fact that it has been used on

prostate cancer men for more than fifteen years. Is Brachytherapy a better choice than EBRT (External Beam Radiation Treatment) – we don’t know because there are no studies. Why are Cryotherapy and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both were used fourteen years ago, but there are no studies to show how they compare with other treatments. And so it goes – no apparent co-operation, no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It is little wonder that men diagnosed today are initially are in much the same position as I was 14 years ago. Seeing doctors who seem to have biased opinions, to provide information that is outdated, to apparently not have any real interest in the long term outcome. Maybe that’s unfair but after reading literally thousands of experiences, those are some of the conclusions I have come to. I don’t think it is likely to change in the future, but whatever comes my way, I’m grabbing life with both hands and we’re having fun until something stops me, literally dead in my tracks!!

All the best to all of you

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 2.3 Aug '10

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]

Terry,

Very well said.

And congrats. on a bitter sweet anniversary.

d.

I got my

latest PSA result on Friday, 14 years to the

day from the date of my biopsy. Ten weeks after starting my next round

of ADT

(one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3

and I’m

hoping that when I get the next shot next week, the third shot may be

unnecessary.

No new side effects yet, so I’ll hold thumbs on that.

I’m not a

great one for retrospective second

guessing, so on anniversaries like this I never start on the “what

if’s”

, but I do look back on what has happened over the years and wonder how

many of

the things we (my good lady and I) have done in these past 14 years we

would

actually have go around to doing without the impetus of a

life-threatening

disease. Would we still be saying “We MUST…..……one of

these days.” Certainly the dire forecasts of my early demise helped us

focus on what was important now – as a good friend said “This is

not a rehearsal.” , and so we have been to places we had wanted to see

and travelled far and wide. We’ve had some great experiences and have

met

people we would otherwise never have got to know. I know that the newly

diagnosed man – and his loved ones – may find it difficult to

see any good in his diagnosis, but I am here to say that for most of

us, it

ends up as a positive experience simply because we can establish more

clearly

the value of being alive.

The other

aspect of our shared disease that I contemplated

was how little things have really changed in the past 14 years. Of

course there

have been what appear to be significant improvements in the two

mainstay

therapies – surgery and radiation, with new, and very expensive

machinery

being designed and brought into use. But ……there are still no studies

that demonstrate that using a robot assisted surgical procedure is in

fact a

better way to go than the old manual open surgery; that the high doses

of

radiation delivered more accurately and more quickly will in the long

run have

a better outcome than the old, smaller fractionated dose protocols;

that proton

beam radiation is better or worse or the same as photon beam radiation

–

in fact in some quarters this is regarded as an experimental therapy

despite

the fact that it has been used on prostate cancer men for more than

fifteen

years. Is Brachytherapy a better choice than EBRT (External Beam

Radiation

Treatment) – we don’t know because there are no studies. Why are

Cryotherapy

and HIFU (High Intensity Focused Ultrasound) labelled as experimental

still? Both

were used fourteen years ago, but there are no studies to show how they

compare

with other treatments. And so it goes – no apparent co-operation, no

agreement, no certainty in diagnosis, in treatment choice, in likely

outcome.

It is little

wonder that men diagnosed today are

initially are in much the same position as I was 14 years ago. Seeing

doctors who

seem to have biased opinions, to provide information that is outdated,

to

apparently not have any real interest in the long term outcome. Maybe

that’s

unfair but after reading literally thousands of experiences, those are

some of

the conclusions I have come to. I don’t think it is likely to change in

the future, but whatever comes my way, I’m grabbing life with both

hands

and we’re having fun until something stops me, literally dead in my

tracks!!

All the best

to all of you

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 2.3 Aug '10

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]

Terry,

Thank you for a very inspirational post.

I was surprised when I learned that there were all of these treatments

available but not much in comparisons between them.. Pretty hard to make

a decision for yourself without those data points.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert

Sent: Monday, August 16, 2010 3:36

AM

To: 'Prostate Problems Mailing

LIst'; ProstateCancerSupport ;

newdx@...; ww@...

Subject:

14 years today......

I

got my latest PSA result on Friday, 14 years to the day from the date of my

biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my

PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I

get the next shot next week, the third shot may be unnecessary. No new side

effects yet, so I’ll hold thumbs on that.

I’m

not a great one for retrospective second guessing, so on anniversaries like

this I never start on the “what if’s” , but I do look back on

what has happened over the years and wonder how many of the things we (my good

lady and I) have done in these past 14 years we would actually have go around

to doing without the impetus of a life-threatening disease. Would we still be

saying “We MUST…..……one of these days.” Certainly

the dire forecasts of my early demise helped us focus on what was important now

– as a good friend said “This is not a rehearsal.” , and so

we have been to places we had wanted to see and travelled far and wide.

We’ve had some great experiences and have met people we would otherwise

never have got to know. I know that the newly diagnosed man – and his

loved ones – may find it difficult to see any good in his

diagnosis, but I am here to say that for most of us, it ends up as a positive

experience simply because we can establish more clearly the value of being

alive.

The

other aspect of our shared disease that I contemplated was how little things

have really changed in the past 14 years. Of course there have been what appear

to be significant improvements in the two mainstay therapies – surgery

and radiation, with new, and very expensive machinery being designed and

brought into use. But ……there are still no studies that demonstrate

that using a robot assisted surgical procedure is in fact a better way to go

than the old manual open surgery; that the high doses of radiation delivered

more accurately and more quickly will in the long run have a better outcome

than the old, smaller fractionated dose protocols; that proton beam radiation is

better or worse or the same as photon beam radiation – in fact in some

quarters this is regarded as an experimental therapy despite the fact that it

has been used on prostate cancer men for more than fifteen years. Is

Brachytherapy a better choice than EBRT (External Beam Radiation Treatment)

– we don’t know because there are no studies. Why are Cryotherapy

and HIFU (High Intensity Focused Ultrasound) labelled as experimental still?

Both were used fourteen years ago, but there are no studies to show how they

compare with other treatments. And so it goes – no apparent co-operation,

no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It

is little wonder that men diagnosed today are initially are in much the same

position as I was 14 years ago. Seeing doctors who seem to have biased

opinions, to provide information that is outdated, to apparently not have any

real interest in the long term outcome. Maybe that’s unfair but after

reading literally thousands of experiences, those are some of the conclusions I

have come to. I don’t think it is likely to change in the future, but

whatever comes my way, I’m grabbing life with both hands and we’re

having fun until something stops me, literally dead in my tracks!!

All the best to all of you

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 2.3 Aug '10

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]

Terry Herbert wrote:

....

> I’m not a great one for retrospective second guessing, so on

> anniversaries like this I never start on the “what if’s†, but

> I do look back on what has happened over the years and wonder

> how many of the things we (my good lady and I) have done in

> these past 14 years we would actually have go around to doing

> without the impetus of a life-threatening disease. Would we

> still be saying “We MUST…..……one of these days.†Certainly the

> dire forecasts of my early demise helped us focus on what was

> important now – as a good friend said “This is not a

> rehearsal.†, and so we have been to places we had wanted to

> see and travelled far and wide. We’ve had some great

> experiences and have met people we would otherwise never have

> got to know. I know that the newly diagnosed man – and his

> loved ones – may find it difficult to see any good in his

> diagnosis, but I am here to say that for most of us, it ends up

> as a positive experience simply because we can establish more

> clearly the value of being alive.

....

Very well said Terry.

Here's hoping that, 14 years from now, we'll all be here and

celebrate again.

Alan

[Guest guest]

Hi Terry,

Just wanted to say congratulatios on your PSA drop. Just goes to shoe how well ADT works, I just don't like the side effects of it from a wife's prospective. Sorry to hear you are still having to take it though. But 14 years is a long time. The doctors told us that with treatment my husband could live another good ten years. But I try not to put to much stock in what they say as far as time is concerned. They can't and shouldn't do that, only God knows, they could say "you have many good years to look forward too."---Just my opinion. My husband's PSA was 7.9, Gleason #9,stage 2b (I'm not sure on that one, at the moment). His last PSA was dated July 15th was 0.20. He had IMRT treatments and was very pleased with it. It's two and a half years from diagnose. I hope you continue get hold of you PSA, hopefully with no more injections. My husband was also on ADT ( Zoladex) for one year

I will keep you and your family in my thoughts and prayers.

Sincerely,

Sheila

PS: I enjoy reading your posts also. Have a good day.

-- Original Message -----To: "Prostate Problems Mailing LIst" , ProstateCancerSupport , newdx@..., ww@...Sent: Monday, August 16, 2010 12:35:47 AMSubject: 14 years today......

I got my latest PSA result on Friday, 14 years to the day from the date of my biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I get the next shot next week, the third shot may be unnecessary. No new side effects yet, so I’ll hold thumbs on that.

I’m not a great one for retrospective second guessing, so on anniversaries like this I never start on the “what if’s†, but I do look back on what has happened over the years and wonder how many of the things we (my good lady and I) have done in these past 14 years we would actually have go around to doing without the impetus of a life-threatening disease. Would we still be saying “We MUST…..……one of these days.†Certainly the dire forecasts of my early demise helped us focus on what was important now – as a good friend said “This is not a rehearsal.†, and so we have been to places we had wanted to see and travelled far and wide. We’ve had some great experiences and have met people we would otherwise never have got to know. I know that the newly diagnosed man – and his loved ones – may find it difficult to see any good in his diagnosis, but I am here to say that for most of us, it ends up as a positive experience simply because we can establish more clearly the value of being alive.

The other aspect of our shared disease that I contemplated was how little things have really changed in the past 14 years. Of course there have been what appear to be significant improvements in the two mainstay therapies – surgery and radiation, with new, and very expensive machinery being designed and brought into use. But ……there are still no studies that demonstrate that using a robot assisted surgical procedure is in fact a better way to go than the old manual open surgery; that the high doses of radiation delivered more accurately and more quickly will in the long run have a better outcome than the old, smaller fractionated dose protocols; that proton beam radiation is better or worse or the same as photon beam radiation – in fact in some quarters this is regarded as an experimental therapy despite the fact that it has been used on prostate cancer men for more than fifteen years. Is Brachytherapy a better choice than EBRT (External Beam Radiation Treatment) – we don’t know because there are no studies. Why are Cryotherapy and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both were used fourteen years ago, but there are no studies to show how they compare with other treatments. And so it goes – no apparent co-operation, no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It is little wonder that men diagnosed today are initially are in much the same position as I was 14 years ago. Seeing doctors who seem to have biased opinions, to provide information that is outdated, to apparently not have any real interest in the long term outcome. Maybe that’s unfair but after reading literally thousands of experiences, those are some of the conclusions I have come to. I don’t think it is likely to change in the future, but whatever comes my way, I’m grabbing life with both hands and we’re having fun until something stops me, literally dead in my tracks!!

All the best to all of you

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 2.3 Aug '10

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]

In between a whole bunch of other good stuff, Terry said:I know that the newly

diagnosed man – and his loved ones – may find it difficult to

see any good in his diagnosis, but I am here to say that for most of us, it

ends up as a positive experience simply because we can establish more clearly

the value of being alive.

and

I don’t think it is likely to change in

the future, but whatever comes my way, I’m grabbing life with both hands

and we’re having fun until something stops me, literally dead in my

tracks!!

Damned good sentiments, you're an inspiration Terry. Living, with or without disease, is most certainly going to be better and fuller when done with the attitude you describe. Savor and appreciate life, find its poetry and its gusto. Screw cancer, I got things to do. Happy anniversary, Terry!/stephensurgery 2008 / radiation-lupron 2009/10 / and whatever comes next . . .

[Guest guest]

Good news, I'll look forward to your post in 14 more years.

Subject: 14 years today......To: "'Prostate Problems Mailing LIst'" , ProstateCancerSupport , newdx@..., ww@...Date: Monday, August 16, 2010, 3:35 AM

I got my latest PSA result on Friday, 14 years to the day from the date of my biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I get the next shot next week, the third shot may be unnecessary. No new side effects yet, so I’ll hold thumbs on that.

I’m not a great one for retrospective second guessing, so on anniversaries like this I never start on the “what if’s†, but I do look back on what has happened over the years and wonder how many of the things we (my good lady and I) have done in these past 14 years we would actually have go around to doing without the impetus of a life-threatening disease. Would we still be saying “We MUST…..……one of these days.†Certainly the dire forecasts of my early demise helped us focus on what was important now – as a good friend said “This is not a rehearsal.†, and so we have been to places we had wanted to see and travelled far and wide. We’ve had some great experiences and have met people we would otherwise never have got to know. I know that the newly diagnosed man – and his loved ones – may find it difficult

to see any good in his diagnosis, but I am here to say that for most of us, it ends up as a positive experience simply because we can establish more clearly the value of being alive.

The other aspect of our shared disease that I contemplated was how little things have really changed in the past 14 years. Of course there have been what appear to be significant improvements in the two mainstay therapies – surgery and radiation, with new, and very expensive machinery being designed and brought into use. But ……there are still no studies that demonstrate that using a robot assisted surgical procedure is in fact a better way to go than the old manual open surgery; that the high doses of radiation delivered more accurately and more quickly will in the long run have a better outcome than the old, smaller fractionated dose protocols; that proton beam radiation is better or worse or the same as photon beam radiation – in fact in some quarters this is regarded as an experimental therapy despite the fact that it has been

used on prostate cancer men for more than fifteen years. Is Brachytherapy a better choice than EBRT (External Beam Radiation Treatment) – we don’t know because there are no studies. Why are Cryotherapy and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both were used fourteen years ago, but there are no studies to show how they compare with other treatments. And so it goes – no apparent co-operation, no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It is little wonder that men diagnosed today are initially are in much the same position as I was 14 years ago. Seeing doctors who seem to have biased opinions, to provide information that is outdated, to apparently not have any real interest in the long term outcome. Maybe that’s unfair but after reading literally thousands of experiences, those are some of the conclusions I have come to. I don’t think it is likely to change in the future, but whatever comes my way, I’m grabbing life with both hands and we’re having fun until something stops me, literally dead in my tracks!!

All the best to all of you

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 2.3 Aug '10

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]

Well said, and, good to read your news about your declining psa.Happy Anniversay!DarrylSubject: 14 years today......To: "'Prostate Problems Mailing LIst'" , ProstateCancerSupport , newdx@..., ww@...Date: Monday, August 16, 2010, 3:35 AM

I got my latest PSA result on Friday, 14 years to the

day from the date of my biopsy. Ten weeks after starting my next round of ADT

(one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m

hoping that when I get the next shot next week, the third shot may be unnecessary.

No new side effects yet, so I’ll hold thumbs on that. I’m not a great one for retrospective second

guessing, so on anniversaries like this I never start on the “what if’sâ€

, but I do look back on what has happened over the years and wonder how many of

the things we (my good lady and I) have done in these past 14 years we would

actually have go around to doing without the impetus of a life-threatening

disease. Would we still be saying “We MUST…..……one of

these days.†Certainly the dire forecasts of my early demise helped us

focus on what was important now – as a good friend said “This is

not a rehearsal.†, and so we have been to places we had wanted to see

and travelled far and wide. We’ve had some great experiences and have met

people we would otherwise never have got to know. I know that the newly

diagnosed man – and his loved ones – may find it difficult to

see any good in his diagnosis, but I am here to say that for most of us, it

ends up as a positive experience simply because we can establish more clearly

the value of being alive. The other aspect of our shared disease that I contemplated

was how little things have really changed in the past 14 years. Of course there

have been what appear to be significant improvements in the two mainstay

therapies – surgery and radiation, with new, and very expensive machinery

being designed and brought into use. But ……there are still no studies

that demonstrate that using a robot assisted surgical procedure is in fact a

better way to go than the old manual open surgery; that the high doses of

radiation delivered more accurately and more quickly will in the long run have

a better outcome than the old, smaller fractionated dose protocols; that proton

beam radiation is better or worse or the same as photon beam radiation –

in fact in some quarters this is regarded as an experimental therapy despite

the fact that it has been used on prostate cancer men for more than fifteen

years. Is Brachytherapy a better choice than EBRT (External Beam Radiation

Treatment) – we don’t know because there are no studies. Why are Cryotherapy

and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both

were used fourteen years ago, but there are no studies to show how they compare

with other treatments. And so it goes – no apparent co-operation, no

agreement, no certainty in diagnosis, in treatment choice, in likely outcome. It is little wonder that men diagnosed today are

initially are in much the same position as I was 14 years ago. Seeing doctors who

seem to have biased opinions, to provide information that is outdated, to

apparently not have any real interest in the long term outcome. Maybe that’s

unfair but after reading literally thousands of experiences, those are some of

the conclusions I have come to. I don’t think it is likely to change in

the future, but whatever comes my way, I’m grabbing life with both hands

and we’re having fun until something stops me, literally dead in my

tracks!! All the best to all of you 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 2.3 Aug '10 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]



Interesting. I'm going to call my doctor tomorrow and see what he says about Zoladex. Anything to avoid surgery.

JK

Oklahoma

14 years today......To: "'Prostate Problems Mailing LIst'" , ProstateCancerSupport , newdx@..., ww@...Date: Monday, August 16, 2010, 3:35 AM

I got my latest PSA result on Friday, 14 years to the day from the date of my biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I get the next shot next week, the third shot may be unnecessary. No new side effects yet, so I’ll hold thumbs on that.

I’m not a great one for retrospective second guessing, so on anniversaries like this I never start on the “what if’s†, but I do look back on what has happened over the years and wonder how many of the things we (my good lady and I) have done in these past 14 years we would actually have go around to doing without the impetus of a life-threatening disease. Would we still be saying “We MUST…..……one of these days.†Certainly the dire forecasts of my early demise helped us focus on what was important now – as a good friend said “This is not a rehearsal.†, and so we have been to places we had wanted to see and travelled far and wide. We’ve had some great experiences and have met people we would otherwise never have got to know. I know that the newly diagnosed man – and his loved ones – may find it difficult to see any good in his diagnosis, but I am here to say that for most of us, it ends up as a positive experience simply because we can establish more clearly the value of being alive.

The other aspect of our shared disease that I contemplated was how little things have really changed in the past 14 years. Of course there have been what appear to be significant improvements in the two mainstay therapies – surgery and radiation, with new, and very expensive machinery being designed and brought into use. But ……there are still no studies that demonstrate that using a robot assisted surgical procedure is in fact a better way to go than the old manual open surgery; that the high doses of radiation delivered more accurately and more quickly will in the long run have a better outcome than the old, smaller fractionated dose protocols; that proton beam radiation is better or worse or the same as photon beam radiation – in fact in some quarters this is regarded as an experimental therapy despite the fact that it has been used on prostate cancer men for more than fifteen years. Is Brachytherapy a better choice than EBRT (External Beam Radiation Treatment) – we don’t know because there are no studies. Why are Cryotherapy and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both were used fourteen years ago, but there are no studies to show how they compare with other treatments. And so it goes – no apparent co-operation, no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It is little wonder that men diagnosed today are initially are in much the same position as I was 14 years ago. Seeing doctors who seem to have biased opinions, to provide information that is outdated, to apparently not have any real interest in the long term outcome. Maybe that’s unfair but after reading literally thousands of experiences, those are some of the conclusions I have come to. I don’t think it is likely to change in the future, but whatever comes my way, I’m grabbing life with both hands and we’re having fun until something stops me, literally dead in my tracks!!

All the best to all of you

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 2.3 Aug '10

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]

Joe Kirk A wrote:

> Interesting. I'm going to call my doctor tomorrow and see

> what he says about Zoladex. Anything to avoid surgery.

Joe,

I understand your feelings about surgery. I had the same fears.

I didn't want someone to put me to sleep and then go to work with

a knife, leaving me in who knows what condition afterward.

Largely because of those fears I chose radiation as a treatment -

which, so far at least (knock on wood), seems to have eliminated

the cancer.

Looking back on my experience, and with the benefit of the

experience of hundreds of other men in this group and others,

I've come to believe that ALL of the treatments have negative

side effects and all have some benefits - including Zoladex or

other hormone therapies. I now think it's a mistake to focus on

one, either to seek out or to avoid, at all costs. It's better,

I think, to learn about all of them without preconceived ideas

about which is best or worst.

I think the first thing to determine is whether or not you

actually need treatment. Many cases of prostate cancer will take

so long to kill you that you're pretty sure to die of something

else before it can happen. If you have " low risk " disease and

you are old enough, or sick enough with other problems, that

you're likely to die in less than 15 or 20 years anyway, then

treatment may be entirely unnecessary. More and more men in that

situation choose " active surveillance " , in which they get

regularly tested for PSA and only seek treatment if their PSA

goes up a significant amount.

If you do need treatment, the success of that treatment probably

has as much or more to do with the experience and skill of the

doctors as it does with the mode of treatment. I'd rather be

treated by an outstanding surgeon than by a radiation oncologist

who isn't up to snuff, and vice-versa. The best doctors get

higher cure rates, fewer side effects, and faster recoveries.

If you're new to all this, I recommend the following:

1. Get all the information you can.

There are some good books. I like Strum's _Empowered

Patient's Guide to Prostate Cancer_, but there are other very

good ones too.

There are excellent websites. I like:

http://www.cancer.gov/cancertopics/types/prostate

http://www.yananow.net

http://www.prostate-cancer.org/pcricms/

2. Find a real expert to consult with and to treat you.

The average urologist may do half a dozen prostate surgeries

a year. That's just not enough to get and stay good at it.

The real pros do 200 a year.

The National Cancer Institute designates certain hospitals

and clinics as the ones they think are the best in the U.S.

The list is at:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

There aren't any in Oklahoma, but there are some great ones

in Texas and Missouri.

Here's another useful resource for finding experts:

http://www.prostate-cancer.org/pcricms/node/38

You may also find some outstanding doctors in your own area

that aren't on the lists, but do whatever you can to be sure

they really are specialists in prostate cancer and not just

ordinary urologists, radiation oncologists, or medical

oncologists who happen to treat a few cases of prostate

cancer each year.

You might ask your doctor who he would go to for prostate

surgery, for radiation, or for medical treatment. If you

have any contacts in the medical profession, ask them.

3. Come up with a plan that you think is the best you can do.

There are no guarantees with any approach. The best planned

approaches can sometimes fail. The best doctors sometimes

fail. And in the final analysis, we're all going to die of

something. But you'll improve your odds of living longer and

better by actively learning about the disease and treatments

and finding the best doctors available to you. You probably

won't be able to get treatment from the world's greatest

authorities on prostate cancer, but you can certainly find

someone who seems trustworthy, intelligent, honest, and

highly experienced.

Best of luck.

Alan

[Guest guest]

I AGREE with not wanting surgery. I opted for the proton/external raidiation..and happy I did.

No catheters..or recovery time..and so far ...all is well. I would sure opt for the same treatment..and recommend that to anyone with similar numbers...my psa was 16....and a Gleason of 7, having risen from 2 to 16 in about 8 months.> Interesting. I'm going to call my doctor tomorrow and see> what he says about Zoladex. Anything to avoid surgery.Joe,I understand your feelings about surgery. I had the same fears.I didn't want someone to put me to sleep and then go to work witha knife, leaving me in who knows what condition afterward.Largely because of those fears I chose radiation as a treatment -which, so far at least (knock on wood), seems to have eliminatedthe cancer.Looking back on my experience, and with the benefit of theexperience of hundreds of other men in this group and others,I've come to believe that ALL of the treatments have negativeside effects and all have some benefits - including Zoladex orother hormone

therapies. I now think it's a mistake to focus onone, either to seek out or to avoid, at all costs. It's better,I think, to learn about all of them without preconceived ideasabout which is best or worst.I think the first thing to determine is whether or not youactually need treatment. Many cases of prostate cancer will takeso long to kill you that you're pretty sure to die of somethingelse before it can happen. If you have "low risk" disease andyou are old enough, or sick enough with other problems, thatyou're likely to die in less than 15 or 20 years anyway, thentreatment may be entirely unnecessary. More and more men in thatsituation choose "active surveillance", in which they getregularly tested for PSA and only seek treatment if their PSAgoes up a significant amount.If you do need treatment, the success of that treatment probablyhas as much or more to do with the experience and

skill of thedoctors as it does with the mode of treatment. I'd rather betreated by an outstanding surgeon than by a radiation oncologistwho isn't up to snuff, and vice-versa. The best doctors gethigher cure rates, fewer side effects, and faster recoveries.If you're new to all this, I recommend the following:1. Get all the information you can.There are some good books. I like Strum's _EmpoweredPatient's Guide to Prostate Cancer_, but there are other verygood ones too.There are excellent websites. I like:http://www.cancer.gov/cancertopics/types/prostatehttp://www.yananow.nethttp://www.prostate-cancer.org/pcricms/2. Find a real expert to

consult with and to treat you.The average urologist may do half a dozen prostate surgeriesa year. That's just not enough to get and stay good at it.The real pros do 200 a year.The National Cancer Institute designates certain hospitalsand clinics as the ones they think are the best in the U.S.The list is at:http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.htmlThere aren't any in Oklahoma, but there are some great onesin Texas and Missouri.Here's another useful resource for finding experts:http://www.prostate-cancer.org/pcricms/node/38You may also find some outstanding doctors in your own areathat aren't on the lists, but do whatever you can to be surethey

really are specialists in prostate cancer and not justordinary urologists, radiation oncologists, or medicaloncologists who happen to treat a few cases of prostatecancer each year.You might ask your doctor who he would go to for prostatesurgery, for radiation, or for medical treatment. If youhave any contacts in the medical profession, ask them.3. Come up with a plan that you think is the best you can do.There are no guarantees with any approach. The best plannedapproaches can sometimes fail. The best doctors sometimesfail. And in the final analysis, we're all going to die ofsomething. But you'll improve your odds of living longer andbetter by actively learning about the disease and treatmentsand finding the best doctors available to you. You probablywon't be able to get treatment from the world's greatestauthorities on prostate cancer, but you can certainly findsomeone who

seems trustworthy, intelligent, honest, andhighly experienced.Best of luck.Alan

[Guest guest]

I belong to a support group in Wis..will find about the Zoladex at the next meeting.

Subject: 14 years today......To: "'Prostate Problems Mailing LIst'" , ProstateCancerSupport , newdx@..., ww@...Date: Monday, August 16, 2010, 3:35 AM

I got my latest PSA result on Friday, 14 years to the day from the date of my biopsy. Ten weeks after starting my next round of ADT (one shot of Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I’m hoping that when I get the next shot next week, the third shot may be unnecessary. No new side effects yet, so I’ll hold thumbs on that.

I’m not a great one for retrospective second guessing, so on anniversaries like this I never start on the “what if’s†, but I do look back on what has happened over the years and wonder how many of the things we (my good lady and I) have done in these past 14 years we would actually have go around to doing without the impetus of a life-threatening disease. Would we still be saying “We MUST…..……one of these days.†Certainly the dire forecasts of my early demise helped us focus on what was important now – as a good friend said “This is not a rehearsal.†, and so we have been to places we had wanted to see and travelled far and wide. We’ve had some great experiences and have met people we would otherwise never have got to know. I know that the newly diagnosed man – and his loved ones – may find

it difficult to see any good in his diagnosis, but I am here to say that for most of us, it ends up as a positive experience simply because we can establish more clearly the value of being alive.

The other aspect of our shared disease that I contemplated was how little things have really changed in the past 14 years. Of course there have been what appear to be significant improvements in the two mainstay therapies – surgery and radiation, with new, and very expensive machinery being designed and brought into use. But ……there are still no studies that demonstrate that using a robot assisted surgical procedure is in fact a better way to go than the old manual open surgery; that the high doses of radiation delivered more accurately and more quickly will in the long run have a better outcome than the old, smaller fractionated dose protocols; that proton beam radiation is better or worse or the same as photon beam radiation – in fact in some quarters this is regarded as an experimental therapy despite the fact that it

has been used on prostate cancer men for more than fifteen years. Is Brachytherapy a better choice than EBRT (External Beam Radiation Treatment) – we don’t know because there are no studies. Why are Cryotherapy and HIFU (High Intensity Focused Ultrasound) labelled as experimental still? Both were used fourteen years ago, but there are no studies to show how they compare with other treatments. And so it goes – no apparent co-operation, no agreement, no certainty in diagnosis, in treatment choice, in likely outcome.

It is little wonder that men diagnosed today are initially are in much the same position as I was 14 years ago. Seeing doctors who seem to have biased opinions, to provide information that is outdated, to apparently not have any real interest in the long term outcome. Maybe that’s unfair but after reading literally thousands of experiences, those are some of the conclusions I have come to. I don’t think it is likely to change in the future, but whatever comes my way, I’m grabbing life with both hands and we’re having fun until something stops me, literally dead in my tracks!!

All the best to all of you

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 2.3 Aug '10

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]

Hi Terry,

With my husband recently being diagnosed and still going through those emotional

ups and downs, your post was inspirational and I thank you for sharing it with

us. We are trying to have the same attitude in just really trying to enjoy our

lives and our time together and be thankful for each and every day.

I pray for more positive results for you when you get your next PSA.

Sandy

>

> I got my latest PSA result on Friday, 14 years to the day from the date of

> my biopsy. Ten weeks after starting my next round of ADT (one shot of

> Zoladex) my PSA shows a satisfactory drop from 8.2 to 2.3 and I'm hoping

> that when I get the next shot next week, the third shot may be unnecessary.

> No new side effects yet, so I'll hold thumbs on that.

>

>

>

> I'm not a great one for retrospective second guessing, so on anniversaries

> like this I never start on the " what if's " , but I do look back on what has

> happened over the years and wonder how many of the things we (my good lady

> and I) have done in these past 14 years we would actually have go around to

> doing without the impetus of a life-threatening disease. Would we still be

> saying " We MUST.....one of these days. " Certainly the dire forecasts of my

> early demise helped us focus on what was important now - as a good friend

> said " This is not a rehearsal. " , and so we have been to places we had

> wanted to see and travelled far and wide. We've had some great experiences

> and have met people we would otherwise never have got to know. I know that

> the newly diagnosed man - and his loved ones - may find it difficult to see

> any good in his diagnosis, but I am here to say that for most of us, it ends

> up as a positive experience simply because we can establish more clearly the

> value of being alive.

>

>

>

> The other aspect of our shared disease that I contemplated was how little

> things have really changed in the past 14 years. Of course there have been

> what appear to be significant improvements in the two mainstay therapies -

> surgery and radiation, with new, and very expensive machinery being designed

> and brought into use. But ..there are still no studies that demonstrate that

> using a robot assisted surgical procedure is in fact a better way to go than

> the old manual open surgery; that the high doses of radiation delivered more

> accurately and more quickly will in the long run have a better outcome than

> the old, smaller fractionated dose protocols; that proton beam radiation is

> better or worse or the same as photon beam radiation - in fact in some

> quarters this is regarded as an experimental therapy despite the fact that

> it has been used on prostate cancer men for more than fifteen years. Is

> Brachytherapy a better choice than EBRT (External Beam Radiation Treatment)

> - we don't know because there are no studies. Why are Cryotherapy and HIFU

> (High Intensity Focused Ultrasound) labelled as experimental still? Both

> were used fourteen years ago, but there are no studies to show how they

> compare with other treatments. And so it goes - no apparent co-operation, no

> agreement, no certainty in diagnosis, in treatment choice, in likely

> outcome.

>

>

>

> It is little wonder that men diagnosed today are initially are in much the

> same position as I was 14 years ago. Seeing doctors who seem to have biased

> opinions, to provide information that is outdated, to apparently not have

> any real interest in the long term outcome. Maybe that's unfair but after

> reading literally thousands of experiences, those are some of the

> conclusions I have come to. I don't think it is likely to change in the

> future, but whatever comes my way, I'm grabbing life with both hands and

> we're having fun until something stops me, literally dead in my tracks!!

>

>

>

> All the best to all of you

>

> 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 2.3 Aug '10

>

> 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

>