RE: Screening debate

[Guest guest]

--

We need more sophisticated tests, but in the meantime, there ARE ways to

determine the extent and aggressiveness of the disease, to properly profile

it, and to make a determination as a team -- patient, pathologists,

technologists, physicians, and partner -- as to what disease management

strategy fits the stage and grade of the disease. This is the essence of

what we counsel in the Primer. Many men don't take the time to figure out

what the options are and how they will be impacted by treatment before being

panicked into a decision they may live to regret. The first step, before

any consideration of treatment, should be profiling the disease. Prior to

the time that everything that can be known about the cancer IS known, a

serious consideration of treatment options is premature. This is part of

the message that men who have not yet been diagnosed need to hear. Teaching

men this at the time of diagnosis is probably one stage too late. They need

to hear it at the time of their first screening or before they are of an age

where screening is recommended, so that if diagnosed, they ALREADY KNOW what

to do.

Who do you know at the Prostate Cancer Charity that can help us with this

sort of education? It could be a brochure that is handed to men at routine

doctors visits whether they are screened on that particular visit or not,

and it would definitely be presented as part of the informed consent that

should be a part of the screening process. Presently, it is left to the

discretion and possible bias of the physician describing the pros and cons

of screening, if indeed that is ever truly discussed prior to screening,

whether or not to scare the hell out of the patient so that he declines a

PSA and DRE. I am appalled at the shocking number of screening programs

that use PSA without DRE. An earlier DRE despite a PSA which would have

fallen in the normal range, may have changed your own outcome considerably,

. Although it's too late for you, we'll never run out of all those who

are coming along behind you. Maybe we can save at least some of them from

the perils of the missed diagnosis and others from the tragedy of

unnecessary treatment.

Donna

RE: Screening debate

Donna and

I'm sure that you will agree .....

There is no doubt that the men with low grade cancers need to be given the

option of the watching and waiting. This must be active monitoring to make

sure.

I agree that the experts on one field can either only see one route or have

other reasons to press one choice, in our country is the work of such

organisations as the Prostate Cancer Charity and Bacup give good information

- but men need to find out about them at the time of diagnosis.

The problem the medics have is telling the difference. My PSA was 3.7 at age

50, I had a positive DRE. and Gleason 6. I had RRP having been given various

options but my PSA started rising within months.

There are men in a worse predicament than me who missed the opportunity for

treatment and are found with mets on diagnosis.

We need the tests to tell the difference between the pussycats and the

tigers.

Best wishes

_____

[Guest guest]

Donna, Terry,

I have often thought a good method of educating the public is by way of soap operas.

I remember once there was an episode of NYPD and Dennis Franz ( Sipowitz ) was told he had PCa and underwent surgery. If we could find a sympathetic script writer who would do a few episodes of ER for example following a guy from diagnosis to eventual treatment maybe we would get more awareness of the side effects etc.

--We need more sophisticated tests, but in the meantime, there ARE ways todetermine the extent and aggressiveness of the disease, to properly profileit, and to make a determination as a team -- patient, pathologists,technologists, physicians, and partner -- as to what disease managementstrategy fits the stage and grade of the disease. This is the essence ofwhat we counsel in the Primer. Many men don't take the time to figure outwhat the options are and how they will be impacted by treatment before beingpanicked into a decision they may live to regret. The first step, beforeany consideration of treatment, should be profiling the disease. Prior tothe time that everything that can be known about the cancer IS known, aserious consideration of treatment options is premature. This is part ofthe message that men who have not yet been diagnosed need to hear. Teachingmen this at the time of diagnosis is probably one stage too late. They needto hear it at the time of their first screening or before they are of an agewhere screening is recommended, so that if diagnosed, they ALREADY KNOW whatto do.Who do you know at the Prostate Cancer Charity that can help us with thissort of education? It could be a brochure that is handed to men at routinedoctors visits whether they are screened on that particular visit or not,and it would definitely be presented as part of the informed consent thatshould be a part of the screening process. Presently, it is left to thediscretion and possible bias of the physician describing the pros and consof screening, if indeed that is ever truly discussed prior to screening,whether or not to scare the hell out of the patient so that he declines aPSA and DRE. I am appalled at the shocking number of screening programsthat use PSA without DRE. An earlier DRE despite a PSA which would havefallen in the normal range, may have changed your own outcome considerably,. Although it's too late for you, we'll never run out of all those whoare coming along behind you. Maybe we can save at least some of them fromthe perils of the missed diagnosis and others from the tragedy ofunnecessary treatment.Donna-----Original Message-----From: Metcalf Sent: Monday, May 17, 2004 3:39 AMTo: ProstateCancerSupport Subject: RE: Screening debateDonna and I'm sure that you will agree .....There is no doubt that the men with low grade cancers need to be given theoption of the watching and waiting. This must be active monitoring to makesure.I agree that the experts on one field can either only see one route or haveother reasons to press one choice, in our country is the work of suchorganisations as the Prostate Cancer Charity and Bacup give good information- but men need to find out about them at the time of diagnosis. The problem the medics have is telling the difference. My PSA was 3.7 at age50, I had a positive DRE. and Gleason 6. I had RRP having been given variousoptions but my PSA started rising within months. There are men in a worse predicament than me who missed the opportunity fortreatment and are found with mets on diagnosis.We need the tests to tell the difference between the pussycats and thetigers.Best wishes

[Guest guest]

That's a really good idea. My son wants to be a filmmaker. I'll tell him

that the dues he has to pay is making our film. <g>

Donna

RE: Screening debate

Donna and

I'm sure that you will agree .....

There is no doubt that the men with low grade cancers need to be given the

option of the watching and waiting. This must be active monitoring to make

sure.

I agree that the experts on one field can either only see one route or have

other reasons to press one choice, in our country is the work of such

organisations as the Prostate Cancer Charity and Bacup give good information

- but men need to find out about them at the time of diagnosis.

The problem the medics have is telling the difference. My PSA was 3.7 at age

50, I had a positive DRE. and Gleason 6. I had RRP having been given various

options but my PSA started rising within months.

There are men in a worse predicament than me who missed the opportunity for

treatment and are found with mets on diagnosis.

We need the tests to tell the difference between the pussycats and the

tigers.

Best wishes

_____

[Guest guest]

What changes do you see as necessary?

-----Original Message-----From: Inchley Sent: Tuesday, May 18, 2004 7:48 AMTo: ProstateCancerSupport Subject: RE: Screening debate

Donna and ,

May I make a couple of suggestions? If 'What every doctor who treats male patients should know' is to be sent to UK uros (and GPs, who are after all in the front line?), might it be worthwhile making one or two amendments so that it sits more comfortably with the UK 'market'?

Given that there will be resistance in some (many?) quarters ('I know what I'm doing.....cheek'), the more closely it relates to the UK and UK practices the more likely it is to be considered seriously.

Any GP or uro who already follows, or who adopts the guidelines, would probably be more than happy to hand the patient a single page 'companion piece'. This might lean towards the need to become educated, the need to form a partnership with the doc, and give a short list of resources which are not all internet related (computer use is by no means universal in the 50+ age group).

Two birds with one stone?

.

[Guest guest]

Donna and ,

May I make a couple of suggestions? If 'What every doctor who treats male patients should know' is to be sent to UK uros (and GPs, who are after all in the front line?), might it be worthwhile making one or two amendments so that it sits more comfortably with the UK 'market'?

Given that there will be resistance in some (many?) quarters ('I know what I'm doing.....cheek'), the more closely it relates to the UK and UK practices the more likely it is to be considered seriously.

Any GP or uro who already follows, or who adopts the guidelines, would probably be more than happy to hand the patient a single page 'companion piece'. This might lean towards the need to become educated, the need to form a partnership with the doc, and give a short list of resources which are not all internet related (computer use is by no means universal in the 50+ age group).

Two birds with one stone?

.