RE: Screening debate

May 13, 2004

,

I agree wholeheartedly that it depends from which angle one comes from as far as screening is concerned. You say:

<<Then there are the ones who are found to have localised PCa and have uneventful treatment with little or no side effects and find their PSA stays negligable until they die of old age, they thank goodness for screening.>>

And therein lies the most unethical aspect of screening. Probably as many as 90% of those men needed no treatment anyway but they will believe until their dying day that the treatment saved their lives. WW would have been as effective as radical surgery. These men are the foot soldiers of the urologists and are usually on the uro's referral list for future 'victims' to contact. When I was first diagnosed I was told by one of these 'useful idiots' that my uro was "The best surgeon in the country and even if I won the lottery I could not find a better surgeon" I'm afraid I was an idiot for believing all that propaganda.

Soooooooo.........I will never support screening until it is linked to excellent information services about choices as you suggest.

One day we will find out, as Stamey once said, how many men have been so overtreated.

I predict it will be like breast cancer which we are now finding out has been so overtreated because of screening.

Just my take on it.

Regards

, Terry, Sammy and all

The screening debate depends on which angle you come from.

You talk to someone who has had radical treatment with intense side effects having had little information about choices including watching progress to check if the beast is a tiger or a pussy cat - they see lots wrong with screening.

Then if you talk to the young wife who has lost her husband in his early fifties due to a beast that was only found when it was already in his bones and they wonder why it wasn't found earlier.

Then there are the ones who are found to have localised PCa and have uneventful treatment with little or no side effects and find their PSA stays negligable until they die of old age, they thank goodness for screening.

I believe in screening providing it includes PSA and DRE at least, but screening has still to be linked with excellent information about choices. We hear too often about urologists who only give one choice, "I can cure you with my knife". At least I was given choices of EBRT, RRP or Brachytherapy - even in the UK in the drak days of 1996!

Best wishes

May 14, 2004

,

It was not

my intention to start a screening debate. After so many years on the Lists I know

that any discussion is likely to be hot and sterile with people in opposing

camps exchanging ever more strident posts but not changing their minds.

There are

many in our PCa community who recognise that there is value in the concept of

screening, but who are concerned about the effect of the current programs – and

that is what Stamey was driving at, as he has been for years.

The key to

unlock this contentious issue is full disclosure – to provide men with all the

information they need to make their decision – as you say <snip> …. screening has still to be linked with excellent information about

choices.<snip>

As a newcomer to your List, I do not know

how much discussion there has been on the work of Donna Pogliano and Dr

Strum. They were the joint authors of A Primer on Prostate Cancer, probably the

most empowering book available for men with PCa. They have joined forces again

to try and establish a Protocol for Doctors: something that every doctor who

may encounter an elevated PSA can refer to before automatically suggesting

invasive treatment. For anyone interested, the Protocol can be found here http://www.yananow.net/DonnasDoctor.html They are looking for funding at present

and, if they succeed in their efforts, every doctor, every urologist, every

oncologist in the US will receive a copy of this. That may begin to change the

current paradigm.

All the best

Terry Herbert

in sunny Kalk

Bay, South Africa

Diagnosed ‘96:

Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No conventional treatment. Present

PSA 6.25:fPSA 38%

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

-----Original

Message-----

From: Metcalf

Sent: 14 May 2004 01:35

To:

ProstateCancerSupport

Subject:

Screening debate

,

Terry, Sammy and all

The

screening debate depends on which angle you come from.

You

talk to someone who has had radical treatment with intense side effects having

had little information about choices including watching progress to check if

the beast is a tiger or a pussy cat - they see lots wrong with screening.

Then if

you talk to the young wife who has lost her husband in his early fifties due to

a beast that was only found when it was already in his bones and they wonder

why it wasn't found earlier.

Then

there are the ones who are found to have localised PCa and have uneventful

treatment with little or no side effects and find their PSA stays negligable

until they die of old age, they thank goodness for screening.

I

believe in screening providing it includes PSA and DRE at least, but screening

has still to be linked with excellent information about choices. We hear too

often about urologists who only give one choice, " I can cure you with my

knife " . At least I was given choices of EBRT, RRP or Brachytherapy - even

in the UK in the drak days of 1996!

Best

wishes

May 15, 2004

Terry --

Yes, we are still looking for funding. One quote has been obtained to send

the tutorial " What Every Doctor Who Treats Male Patients Should Know " to

550,000 internists and family practitioners in the US. It came to $320,040.

I've got the $40. That leaves us $320,000 short. I don't think we're going

to be able to raise that by having a national prostate cancer bake sale. If

anyone out there has any hot ideas, I'm all ears. I send out emails to all

the agencies I can think of and don't even get the courtesy of a response.

Some days, being an advocate is a tough row to hoe.

Donna

From: Terry Herbert

Sent: Friday, May 14, 2004 3:03 AM

To: ProstateCancerSupport

Subject: RE: Screening debate

,

It was not my intention to start a screening debate. After so many years on

the Lists I know that any discussion is likely to be hot and sterile with

people in opposing camps exchanging ever more strident posts but not

changing their minds.

There are many in our PCa community who recognise that there is value in the

concept of screening, but who are concerned about the effect of the current

programs - and that is what Stamey was driving at, as he has been for years.

The key to unlock this contentious issue is full disclosure - to provide men

with all the information they need to make their decision - as you say

<snip> .... screening has still to be linked with excellent information

about choices.<snip>

As a newcomer to your List, I do not know how much discussion there has been

on the work of Donna Pogliano and Dr Strum. They were the joint

authors of A Primer on Prostate Cancer, probably the most empowering book

available for men with PCa. They have joined forces again to try and

establish a Protocol for Doctors: something that every doctor who may

encounter an elevated PSA can refer to before automatically suggesting

invasive treatment. For anyone interested, the Protocol can be found here

http://www.yananow.net/DonnasDoctor.html

<http://www.yananow.net/DonnasDoctor.html> They are looking for funding at

present and, if they succeed in their efforts, every doctor, every

urologist, every oncologist in the US will receive a copy of this. That may

begin to change the current paradigm.

All the best

Terry Herbert

in sunny Kalk Bay, South Africa

Diagnosed '96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No conventional

treatment. Present PSA 6.25:fPSA 38%

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

Screening debate

, Terry, Sammy and all

The screening debate depends on which angle you come from.

You talk to someone who has had radical treatment with intense side effects

having had little information about choices including watching progress to

check if the beast is a tiger or a pussy cat - they see lots wrong with

screening.

Then if you talk to the young wife who has lost her husband in his early

fifties due to a beast that was only found when it was already in his bones

and they wonder why it wasn't found earlier.

Then there are the ones who are found to have localised PCa and have

uneventful treatment with little or no side effects and find their PSA stays

negligable until they die of old age, they thank goodness for screening.

I believe in screening providing it includes PSA and DRE at least, but

screening has still to be linked with excellent information about choices.

We hear too often about urologists who only give one choice, " I can cure you

with my knife " . At least I was given choices of EBRT, RRP or Brachytherapy -

even in the UK in the drak days of 1996!

Best wishes

_____

May 16, 2004

Donna,

As you will know this is a subject close to my heart. I would like to make a donation to this worthy project so where do I send the check to?

I will also look into doing some sort of fund raising tour here in the UK to generate some cash.

Regards

Terry --Yes, we are still looking for funding. One quote has been obtained to sendthe tutorial "What Every Doctor Who Treats Male Patients Should Know" to550,000 internists and family practitioners in the US. It came to $320,040.I've got the $40. That leaves us $320,000 short. I don't think we're goingto be able to raise that by having a national prostate cancer bake sale. Ifanyone out there has any hot ideas, I'm all ears. I send out emails to allthe agencies I can think of and don't even get the courtesy of a response.Some days, being an advocate is a tough row to hoe.DonnaFrom: Terry Herbert Sent: Friday, May 14, 2004 3:03 AMTo: ProstateCancerSupport Subject: RE: Screening debate,It was not my intention to start a screening debate. After so many years onthe Lists I know that any discussion is likely to be hot and sterile withpeople in opposing camps exchanging ever more strident posts but notchanging their minds. There are many in our PCa community who recognise that there is value in theconcept of screening, but who are concerned about the effect of the currentprograms - and that is what Stamey was driving at, as he has been for years.The key to unlock this contentious issue is full disclosure - to provide menwith all the information they need to make their decision - as you say<snip> .... screening has still to be linked with excellent informationabout choices.<snip> As a newcomer to your List, I do not know how much discussion there has beenon the work of Donna Pogliano and Dr Strum. They were the jointauthors of A Primer on Prostate Cancer, probably the most empowering bookavailable for men with PCa. They have joined forces again to try andestablish a Protocol for Doctors: something that every doctor who mayencounter an elevated PSA can refer to before automatically suggestinginvasive treatment. For anyone interested, the Protocol can be found herehttp://www.yananow.net/DonnasDoctor.html<http://www.yananow.net/DonnasDoctor.html> They are looking for funding atpresent and, if they succeed in their efforts, every doctor, everyurologist, every oncologist in the US will receive a copy of this. That maybegin to change the current paradigm.All the bestTerry Herbert in sunny Kalk Bay, South AfricaDiagnosed '96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No conventionaltreatment. Present PSA 6.25:fPSA 38% 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 theless a man knows, the more sure he is that he knows everything. JoyceCarey-----Original Message-----From: Metcalf Sent: 14 May 2004 01:35To: ProstateCancerSupport Subject: Screening debate, Terry, Sammy and allThe screening debate depends on which angle you come from.You talk to someone who has had radical treatment with intense side effectshaving had little information about choices including watching progress tocheck if the beast is a tiger or a pussy cat - they see lots wrong withscreening.Then if you talk to the young wife who has lost her husband in his earlyfifties due to a beast that was only found when it was already in his bonesand they wonder why it wasn't found earlier.Then there are the ones who are found to have localised PCa and haveuneventful treatment with little or no side effects and find their PSA staysnegligable until they die of old age, they thank goodness for screening.I believe in screening providing it includes PSA and DRE at least, butscreening has still to be linked with excellent information about choices.We hear too often about urologists who only give one choice, "I can cure youwith my knife". At least I was given choices of EBRT, RRP or Brachytherapy -even in the UK in the drak days of 1996!Best wishes _____

May 16, 2004

Donna,

When it comes to something that one is passionate about, international boundaries do not figure in the equation. You say snip <<I wonder how long it would take me tosend out 550,000 copies of this thing if I printed out the piece on my homecomputer and mailed a few each week.>> snip. Well Donna that is precisely what I have done with Cimetidine. Because this non-prescription drug has such positive effects on colon cancer patients I have sent a circular to hundreds of doctors asking why they do not prescribe this fantastic drug as a matter of course. To date I have not had a single

reply ( A predicted response I might add ) Check out:

http://www.lef.org/magazine/mag2002/jul2002_cover_cimetidine_01.html

Another reason I want to make a donation is the fact that I was diagnosed with insignificant PCa ( not that I knew that at the time. Cancer was cancer to me full stop )

My uro fast tracked me into unnecessary radical surgery and I am now incontinent and impotent. Impotence is bad enough but impotence to a 56 year old male is catastrophic. It has ruined my relationship with my beautiful wife. It is time we victims stepped up to the plate and told it like it is. How many times have we heard on the lists men facing RP saying ' I'm not bothered about impotence' ? Well I can tell them that the reality of it is far worse than the perception. I'll let you into a secret. I like sex. The problem is that most of the men I come across think it reflects badly on them to even admit that. So I want to see you make a success of circulating a copy of "What Every Doctor Who Treats Male Patients Should Know" to as many docs as you can. I'm going to start sending copies out to uros over here ( starting with my uro ) With your permission of course.

So let me know where I have to send my donation and let me worry about if it trickles down or not. what goes around, comes around is my motto.

Regards

dear, you are such a peach. But why would patients in the UK want todonate money to fund a mailing to doctors in the US except for somepossibility of a distant benefit under the trickle-down theory? This mighttake a long time to make it's way across the pond, similar to the way goodmedicine seems to move from our east and west coasts toward the middle ofthe country were us Midwestern hicks finally benefit years later. It seemsthat my earlier enthusiasm about getting MRI with spectroscopy in Milwaukeewas short-lived. You can get it in New York if you're a potential RP or RTpatient (they don't want to talk to you if you're having cryo, I'm told),and you can get it in San Francisco at UCSF, but in Milwaukee, theypresently only use it for imaging the brain. They don't know how to do iton prostates. Wrong end of the body I guess. If they had any brains,they'd know that prostates can, under some circumstances, be almost asimportant to men and their partners as brains and sometimes there areinteresting interactions between the two. But we all have our priorities.<g>It seems strange and wonderful to me that someone who doesn't even live inthe US would offer to help. Maybe I should start my own non-profit and takeup a collection to print and distribute this. I asked the National CancerInstitute (NCI) to help and I got the usual response from them, again. Theyeven had the poor taste to mention that I've asked for an endorsement before(for the Primer) and I should know by now that they are funded by thegovernment and can't endorse anything. I read into this that they can'tendorse anything that makes any sense, but I may be overly harsh. Thiswould be our American tax dollars at work, I guess. Maybe if we startsomewhere, start small, some non-profit or for-profit will take pity on usand kick in the rest of the money. I wonder how long it would take me tosend out 550,000 copies of this thing if I printed out the piece on my homecomputer and mailed a few each week. Medical science would have a cure forprostate cancer before I was done. But at the moment, it's the only way Ican think of to get this done. It also seems strange to me that as a prostate cancer advocate and activist,albeit assisted copiously by a renowned physician, I can write decentpatient education materials and proper physician's clinical practiceguidelines, but all the horses and all the King's men in the ACS and theAFUD and the AUA and all the rest of the alphabet soup of prostate canceragencies from A to Z haven't managed to do this? What's happening to allthe money that's poured into all these agencies if they can't do even thesesimple things that EVEN I can do?We will keep trying, and I'll keep your kind offer in mind. I wouldn't beable to solicit donations for the project on any of the discussion lists,that being against the rules, so I'm not really sure how in the world Iwould go about getting the word out that failing in getting any of ourfunded agencies to help with educating our doctors, the job seems to havefallen to the patient community once again. (sigh). But we will find away. Eventually.Donna

May 16, 2004

Donna,

You hit the nail right on the head when you say <<Sometimes the sorrowof all these men robbed of quality of life for no good reason overwhelms me.>>

Consider this little gem from a lecture by Dr Walsh

<<Why did radical prostatectomy become more popular? Well, the operation was safer. There was less blood loss. There was also lower morbidity and quite frankly, there were also fewer surgical procedures for urologists. Stone surgery was not being done very often. And furthermore, because of PSA testing, there were more men with a localized disease being identified.>>

You can see the full lecture at http://www.medsessions.com/PCF2003/frames.htm?session_id= & course_dir=PCF2003

He admits it! ( At least Walsh is honest ) Because they were doing less surgery for stones etc. they had to look for other fish to fry. My uro has done exactly that. He selects men with insignificant PCa for RP. Ones that he knows will still be alive in 10 years anyway. Everyone at the hospital thinks he's great, the patients think he has saved their lives, and his statistics are fantastic. Side effects he doesn't care about. Of course because I have seen the King in the all together everyone else thinks I'm crazy. How could I possibly criticise this great man?

And I look at these men sitting around the support group table and another thing I have noticed is that they are all pretty much from the same socio-economic class. You can pigeon hole every single one of us. I bet if we done a survey on the internet of guys who have been diagnosed and treated with PCa we would find some surprising results. The uros like the soft targets.

Thanks you for your kind words and advice Donna but I am afraid if I have any treatment it will not be in the UK. If you can suggest a good man in the USA I will gladly pay to get the best.

Regards

--I think that you and your wife should see a great ED doctor and try to finda solution to the impotence problem. It breaks my heart that it's ruinedyour relationship. Your incontinence problem can be dealt with as well, viaan artificial urinary sphincter if necessary. Many men regain some qualityof life using an artificial urinary sphincter and a penile implant. Butyou're right. This should never have happened to you. Sometimes the sorrowof all these men robbed of quality of life for no good reason overwhelms me.Needless to say, everyone has permission to print and distribute the "WhatEvery Patient Should Know" document athttp://www.yananow.net/DonnasDoctor.html<http://www.yananow.net/DonnasDoctor.html> and the web version of thePrimer found at http://www.phoenix5.org/Basics/DPprimer0918.html<http://www.phoenix5.org/Basics/DPprimer0918.html> at their pleasure. I will send you my address offlist. I will use the seed money you sendexclusively for this project -- perhaps for paper and postage to distributethe document -- perhaps to figure out how to set up a non-profit using acorporation that I already have organized, leftover from my days as in ahobby business, so that I can solicit donations from the prostate cancercommunity for the purpose of providing prostate cancer education forpatients and doctors. I hope that you understand that your gesture mayindeed be the foundation for a project that will be extremely important tofuture prostate cancer patients. You have my humble gratitude.Donna

May 16, 2004

dear, you are such a peach. But why would patients in the UK want to

donate money to fund a mailing to doctors in the US except for some

possibility of a distant benefit under the trickle-down theory? This might

take a long time to make it's way across the pond, similar to the way good

medicine seems to move from our east and west coasts toward the middle of

the country were us Midwestern hicks finally benefit years later. It seems

that my earlier enthusiasm about getting MRI with spectroscopy in Milwaukee

was short-lived. You can get it in New York if you're a potential RP or RT

patient (they don't want to talk to you if you're having cryo, I'm told),

and you can get it in San Francisco at UCSF, but in Milwaukee, they

presently only use it for imaging the brain. They don't know how to do it

on prostates. Wrong end of the body I guess. If they had any brains,

they'd know that prostates can, under some circumstances, be almost as

important to men and their partners as brains and sometimes there are

interesting interactions between the two. But we all have our priorities.

<g>

It seems strange and wonderful to me that someone who doesn't even live in

the US would offer to help. Maybe I should start my own non-profit and take

up a collection to print and distribute this. I asked the National Cancer

Institute (NCI) to help and I got the usual response from them, again. They

even had the poor taste to mention that I've asked for an endorsement before

(for the Primer) and I should know by now that they are funded by the

government and can't endorse anything. I read into this that they can't

endorse anything that makes any sense, but I may be overly harsh. This

would be our American tax dollars at work, I guess. Maybe if we start

somewhere, start small, some non-profit or for-profit will take pity on us

and kick in the rest of the money. I wonder how long it would take me to

send out 550,000 copies of this thing if I printed out the piece on my home

computer and mailed a few each week. Medical science would have a cure for

prostate cancer before I was done. But at the moment, it's the only way I

can think of to get this done.

It also seems strange to me that as a prostate cancer advocate and activist,

albeit assisted copiously by a renowned physician, I can write decent

patient education materials and proper physician's clinical practice

guidelines, but all the horses and all the King's men in the ACS and the

AFUD and the AUA and all the rest of the alphabet soup of prostate cancer

agencies from A to Z haven't managed to do this? What's happening to all

the money that's poured into all these agencies if they can't do even these

simple things that EVEN I can do?

We will keep trying, and I'll keep your kind offer in mind. I wouldn't be

able to solicit donations for the project on any of the discussion lists,

that being against the rules, so I'm not really sure how in the world I

would go about getting the word out that failing in getting any of our

funded agencies to help with educating our doctors, the job seems to have

fallen to the patient community once again. (sigh). But we will find a

way. Eventually.

Donna

Screening debate

, Terry, Sammy and all

The screening debate depends on which angle you come from.

You talk to someone who has had radical treatment with intense side effects

having had little information about choices including watching progress to

check if the beast is a tiger or a pussy cat - they see lots wrong with

screening.

Then if you talk to the young wife who has lost her husband in his early

fifties due to a beast that was only found when it was already in his bones

and they wonder why it wasn't found earlier.

Then there are the ones who are found to have localised PCa and have

uneventful treatment with little or no side effects and find their PSA stays

negligable until they die of old age, they thank goodness for screening.

I believe in screening providing it includes PSA and DRE at least, but

screening has still to be linked with excellent information about choices.

We hear too often about urologists who only give one choice, " I can cure you

with my knife " . At least I was given choices of EBRT, RRP or Brachytherapy -

even in the UK in the drak days of 1996!

Best wishes

_____

May 16, 2004

--

I think that you and your wife should see a great ED doctor and try to find

a solution to the impotence problem. It breaks my heart that it's ruined

your relationship. Your incontinence problem can be dealt with as well, via

an artificial urinary sphincter if necessary. Many men regain some quality

of life using an artificial urinary sphincter and a penile implant. But

you're right. This should never have happened to you. Sometimes the sorrow

of all these men robbed of quality of life for no good reason overwhelms me.

Needless to say, everyone has permission to print and distribute the " What

Every Patient Should Know " document at

http://www.yananow.net/DonnasDoctor.html

<http://www.yananow.net/DonnasDoctor.html> and the web version of the

Primer found at http://www.phoenix5.org/Basics/DPprimer0918.html

<http://www.phoenix5.org/Basics/DPprimer0918.html> at their pleasure.

I will send you my address offlist. I will use the seed money you send

exclusively for this project -- perhaps for paper and postage to distribute

the document -- perhaps to figure out how to set up a non-profit using a

corporation that I already have organized, leftover from my days as in a

hobby business, so that I can solicit donations from the prostate cancer

community for the purpose of providing prostate cancer education for

patients and doctors. I hope that you understand that your gesture may

indeed be the foundation for a project that will be extremely important to

future prostate cancer patients. You have my humble gratitude.

Donna

Re: Screening debate

Donna,

When it comes to something that one is passionate about, international

boundaries do not figure in the equation. You say snip <<I wonder how

long it would take me to

send out 550,000 copies of this thing if I printed out the piece on my home

computer and mailed a few each week.>> snip. Well Donna that is precisely

what I have done with Cimetidine. Because this non-prescription drug has

such positive effects on colon cancer patients I have sent a circular to

hundreds of doctors asking why they do not prescribe this fantastic drug as

a matter of course. To date I have not had a single

reply ( A predicted response I might add ) Check out:

<http://www.lef.org/magazine/mag2002/jul2002_cover_cimetidine_01.html>

http://www.lef.org/magazine/mag2002/jul2002_cover_cimetidine_01.html

Another reason I want to make a donation is the fact that I was diagnosed

with insignificant PCa ( not that I knew that at the time. Cancer was cancer

to me full stop )

My uro fast tracked me into unnecessary radical surgery and I am now

incontinent and impotent. Impotence is bad enough but impotence to a 56

year old male is catastrophic. It has ruined my relationship with my

beautiful wife. It is time we victims stepped up to the plate and told it

like it is. How many times have we heard on the lists men facing RP saying

' I'm not bothered about impotence' ? Well I can tell them that the reality

of it is far worse than the perception. I'll let you into a secret. I like

sex. The problem is that most of the men I come across think it reflects

badly on them to even admit that. So I want to see you make a success of

circulating a copy of " What Every Doctor Who Treats Male Patients Should

Know " to as many docs as you can. I'm going to start sending copies out to

uros over here ( starting with my uro

<http://cdn-cf.aol.com/se/smi/0201d20638/01> ) With your permission of

course.

So let me know where I have to send my donation and let me worry about if it

trickles down or not. what goes around, comes around is my motto.

Regards

In a message dated 16/05/2004 16:56:58 GMT Standard Time,

dpoglian@... writes: