Re: Re: Re: Active surveillance now acceptable - who knew?

[Guest guest]

wrote:

> ... the patient should always bear in mind that if he intends

> to do AS, that the more opinions he gets the more likely that

> the vast majority of those opinions will be against him doing

> so. Most doctors today who treat PCa are almost universally

> against AS. So, if you find one doctor who is willing to go

> along with your experiment, the next 10 you come into contact

> with will likely be very much against it.

This is a real problem. If you think that you might be a

candidate for active surveillance I suggest asking your doctor

questions like this:

In your opinion, what are the criteria for active

surveillance?

For what percentage of your patients do you prescribe active

surveillance?

If the doctor can't or won't give reasonable answers, and as

says, a large number of them can't or won't, then that

doctor's opinion about active surveillance vs. treatment in your

case is probably worthless.

Since leading experts in the field have been saying for some time

that active surveillance is the right choice for many men, any

doctor that never advocates active surveillance is failing to

follow established guidelines. I wouldn't trust that he follows

them in his treatment either. Even if you choose treatment, he

might not be the right guy to do your surgery or radiation.

Alan

[Guest guest]

That is very good advice Alan. Always try to be as subtle as you can in order to get your information without ruffling any feathers. Some doctors are easy going but a lot more of them can be very thin skinned and have become accustomed to their opinions not being questioned or challenged. So, the best way to get that opinion is indirectly. If you ask the right questions you can elicit the answers you are looking for without a confrontation. All you really want is the information anyway so no reason to get the doctors dander up unecessarily.

This new law that they are enacting with regards to electronic records is going to create more problems than people have contemplated. When you want a second opinion, the best way to get it is for the doctor you are receiving the second opinion from not know that you have already received an opinion Too many times in the past I have had doctors simply tell me that they agreed with the previous doctor without ever even examining me. It was very frustrating. I got used to going to doctors and not even telling them what some other doctor said and didn't let them know that I had seen another doctor. With the enactment of this new law, it's going to be next to impossible to get an unvarnished second opinion. This I forsee is going to be very dangerous for patients who have been mis-diagnosed from the outset. I have seen this happen and in areas other than PCa it has happened to me.

BOB> ... the patient should always bear in mind that if he intends> to do AS, that the more opinions he gets the more likely that> the vast majority of those opinions will be against him doing> so. Most doctors today who treat PCa are almost universally> against AS. So, if you find one doctor who is willing to go> along with your experiment, the next 10 you come into contact> with will likely be very much against it.This is a real problem. If you think that you might be acandidate for active surveillance I suggest asking your doctor questions like this:In your opinion, what are the criteria for activesurveillance?For what percentage of your patients do you prescribe

activesurveillance?If the doctor can't or won't give reasonable answers, and as says, a large number of them can't or won't, then thatdoctor's opinion about active surveillance vs. treatment in yourcase is probably worthless.Since leading experts in the field have been saying for some timethat active surveillance is the right choice for many men, anydoctor that never advocates active surveillance is failing tofollow established guidelines. I wouldn't trust that he followsthem in his treatment either. Even if you choose treatment, hemight not be the right guy to do your surgery or radiation.Alan

[Guest guest]

Being tactful is usually a good idea, but in this particular case

I was actually going for a straightforward understanding of a

doctor's position on active surveillance.

As you pointed out in your earlier posting, many doctors NEVER

recommend active surveillance. There are NO circumstances in

which they would recommend it, even if only a sliver of Gleason 6

cancer is discovered in a saturation biopsy.

A doctor like that really doesn't care what your disease

characteristics are. He's going to recommend treatment. So he's

not a guy that should be consulted if you don't know whether

treatment is necessary. I should think that if he answers my

questions at all, you've got the answer to whether he's objective

about AS.

For example, if he says: " A patient with Gleason <= 6, no more

than two of twelve cores positive, < 50% in each core, and age

>= 65 if in good health, is a good candidate for AS " , then you've

both got something to go on. If you fit the bill, he should

recommend it for you. If he doesn't recommend for you, he has to

explain why - which he probably won't be able to do - which means

he probably won't be able to answer the original question at all.

Also, if he answers the second question with, " Well, I haven't

yet had a patient for whom I've prescribed AS " , he's got some

explaining to do.

I haven't actually tried this. My disease parameters were way

worse than the threshold described above. So I'd be very curious

to have people who do try it report back and tell us what the

doctors said.

Alan

wrote:

> That is very good advice Alan. Always try to be as subtle as

> you can in order to get your information without ruffling any

> feathers. ...

Alan wrote:

>> If you think that you might be a candidate for active

>> surveillance I suggest asking your doctor questions like this:

>>

>> In your opinion, what are the criteria for active

>> surveillance?

>>

>> For what percentage of your patients do you prescribe active

>> surveillance?

>>

>> If the doctor can't or won't give reasonable answers, and as

>> says, a large number of them can't or won't, then that

>> doctor's opinion about active surveillance vs. treatment in your

>> case is probably worthless.

[Guest guest]

I hear you Alan, but the other potential problem you have to contend with is that the doctor with whom you are speaking may not be forthcoming as many look at patients as people whom they believe do not understand medicine and need to be managed in spite of what they themselves might wish to do. Asking direct questions does not necessarily elicit direct or truthful answers. Let me put it this way, when I was intially Dx and had my meeting with all of the specialists it was clear that they wanted me to choose some form of definitive treatment and do so quickly. I was confused, unsure of myself and quite frankly scared. I had just been Dx and was doing everything I could to educate myself prior to this meeting. So, I asked them, what would happen if I had the surgery and it failed, what

next? The answer spoke volumes to me because I already knew the answer before I asked the question. I was just looking for confirmation. The doctors said to me ''we don't discuss options until after surgery''. Which told me that they assumed I did not know and more importantly, that not telling me told me what I needed to know about them.

Had I said instead that I knew that if I failed surgery that I would go on to castration therapy I would have provoked a much different sort of discussion which i'm sure they would have done everything in their power to placate and disarm me. Which by the way I had several such conversations with doctors on the subject at later dates and they did exactly that. However, I didn't really want a discussion at that point. The purpose of my inquiry was that I was about to let these people do something to me that under normal circumstances I would fight to the death to prevent having done. Therefore I wanted to find out if I could trust them. Their answer told me that I could not. That they had taken a paternalistic attitude towards me and essentially were going to do whatever they wanted with me once I agreed to be treated there. When you begin such a serious discussion

with someone that could impact your life the way that PCa treatment does, you have to be absolutely sure that the people who are going to treat you are not obfuscating the facts, misdirecting your attention, or telling you things to lead you in a direction (treatments) where they have already decided they want you to go.

Also, direct questions to a doctor about his practice, qualifications and success are of little value. I do not know of any doctor who would tell his patients that some other doctor was more qualified than he to treat him or that he had terrible results in treating PCa patients. What afterall would you expect him to say? Actually, he can say anything he wants because you as a patient have no way to check any of his facts other than perhaps his educational qualifications. There is no repository of information that tells you how his patients fared or how many patients he has operated on or anything else about his patients or his practice. He can tell you anything he thinks you may want to hear. So to me at least, all of that is a formality that is a waste of time. I take issue with these advice guru's on T.V. and in print media who tell you to ask these really inane questions. As

if some urologist is going to tell you that most of his patients leak , are impotent and all go on to secondary treatment? I think not. So what's the point in asking questions in that format unless you were in possession of facts he was unaware of ? I think that there are much better ways to get at the truth indirectly and to receive a satisfactory answer and above all, without your doctor being aware of what you are doing and thus preventing any tension or discord between yourself and your doctor. Also, you may get some insights into your doctor that he would otherwise not want to reveal about himself, his practice, his way of thinking etc.in using the indirect method. I have never done well with questioning anyone about anything using a direct question course of action other than in a classroom setting where that is the normal mode of Q+A. . To each his own.

BOB

-

Subject: Re: Re: Re: Re: Active surveillance now acceptable - who knew?To: ProstateCancerSupport Date: Monday, June 13, 2011, 2:30 PM

Being tactful is usually a good idea, but in this particular caseI was actually going for a straightforward understanding of adoctor's position on active surveillance.As you pointed out in your earlier posting, many doctors NEVERrecommend active surveillance. There are NO circumstances inwhich they would recommend it, even if only a sliver of Gleason 6cancer is discovered in a saturation biopsy.A doctor like that really doesn't care what your diseasecharacteristics are. He's going to recommend treatment. So he'snot a guy that should be consulted if you don't know whethertreatment is necessary. I should think that if he answers myquestions at all, you've got the answer to whether he's objectiveabout AS.For example, if he says: "A patient with Gleason <= 6, no morethan two of twelve cores positive, < 50% in each core, and age>= 65 if in good health, is a good candidate

for AS", then you'veboth got something to go on. If you fit the bill, he shouldrecommend it for you. If he doesn't recommend for you, he has toexplain why - which he probably won't be able to do - which meanshe probably won't be able to answer the original question at all.Also, if he answers the second question with, "Well, I haven'tyet had a patient for whom I've prescribed AS", he's got someexplaining to do.I haven't actually tried this. My disease parameters were wayworse than the threshold described above. So I'd be very curiousto have people who do try it report back and tell us what thedoctors said.Alan wrote:> That is very good advice Alan. Always try to be as subtle as> you can in order

to get your information without ruffling any> feathers. ...Alan wrote:>> If you think that you might be a candidate for active>> surveillance I suggest asking your doctor questions like this:>>>> In your opinion, what are the criteria for active>> surveillance?>>>> For what percentage of your patients do you prescribe active>> surveillance?>>>> If the doctor can't or won't give reasonable answers, and as>> says, a large number of them can't or won't, then that>> doctor's opinion about active surveillance vs. treatment in your>> case is probably worthless.

[Guest guest]

> ... the doctor with whom you are speaking may not be

> forthcoming as many look at patients as people whom they

> believe do not understand medicine and need to be managed in

> spite of what they themselves might wish to do. ...

I agree with that and most of the rest of your posting.

I'm sorry that you had such experiences with your doctors. I've

had them too. After a recent followup exam on a radiation trial

I was called by a physician's assistant and told that my PSA had

gone up but it's nothing to worry about. " To be super-duper

careful we'll get another PSA in six months instead of the usual

one year. " I insisted that she talk to the actual doctor and

expected the actual doctor to call me back and explain why she

thought that this was likely nothing, but all I got was the

physician's assistant who couldn't explain anything and muttered

something about patients who get all crazy because of a PSA rise.

It may in fact be nothing, but I was as furious as you about the

patronization and the refusal to talk to me. I know exactly what

you're talking about.

I will say that I've also had good doctors. My first rad onc at

the trial volunteered the fact that I had more than a 50/50

chance of coming out impotent. She always answered all of my

questions as truthfully as she could. I've met other doctors

like her too.

Sometimes you get lucky. I once bought a car from a car salesman

who I thought was honest and straight with me. Of course he

didn't last in the job but, hey, he re-affirmed my faith in

mankind. I'd like to think that he moved on to something better.

Alan

[Guest guest]

Last word from me (for the moment at least)

on this subject.

This excellent article sums the way things

will go, I hope - . http://www.cuaj.ca/cuaj-jauc/vol5-no3/11076.pdf

but I reckon I won’t be around to see itJ

All the best

Prostate men need enlightening, not

frightening

Terry Herbert - diagnosed in 1996 and still

going strong

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

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of

Sent: Saturday, 11 June 2011 2:01

PM

To: ProstateCancerSupport

Subject: Fw: Re:

Re: Active surveillance now acceptable - who knew?

As

for thinking 20 or 30 years out, I cannot imagine that what passes for PCa

treatment today will in any way resemble what PCa treatment will look

like 20 years hence. At least I hope that it does not. It

would be really regretable if the treatment for this disease remained

unchanged over such a long period of time……….

<REMAINDER OF MESSAGE DELETED FOR SPACE REASONS>

[Guest guest]

I wonder if a vampire sucks our blood, will he get prostate cancer? (Just a humorous thought) Always as close as the other end of your computer to help address any prostate cancer concerns. " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack/Prostate Cancer Advocate/Mentor Wichita, Kansas Chapter, Us TOOBiography: http://www.ustoowichita.org/leaders.cfm?content=bio & id=1 Email: maack1@... Chapter Website " Observations " : http://www.ustoowichita.org/observations.cfm From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry HerbertSent: Monday, June 13, 2011 8:27 PMTo: ProstateCancerSupport Subject: RE: Re: Re: Active surveillance now acceptable - who knew? Last word from me (for the moment at least) on this subject. This excellent article sums the way things will go, I hope - . http://www.cuaj.ca/cuaj-jauc/vol5-no3/11076.pdf but I reckon I won’t be around to see itJ All the best Prostate men need enlightening, not frighteningTerry Herbert - diagnosed in 1996 and still going strongRead A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Sent: Saturday, 11 June 2011 2:01 PMTo: ProstateCancerSupport Subject: Fw: Re: Re: Active surveillance now acceptable - who knew? As for thinking 20 or 30 years out, I cannot imagine that what passes for PCa treatment today will in any way resemble what PCa treatment will look like 20 years hence. At least I hope that it does not. It would be really regretable if the treatment for this disease remained unchanged over such a long period of time………. <REMAINDER OF MESSAGE DELETED FOR SPACE REASONS>

[Guest guest]

A very good point and a historical one for Americans because that is exactly how our first president General Washington met his end. BOB

http://www.revolutionarywararchives.org/washdeath.html

''The exact cause of General Washington's death has been the subject of much debate by many in the medical profession. Most modern people can not help but think that the blood letting was a major contributing factor. The total quantity of blood removed from General Washington has been estimated to be 5 to 7 pints.''

Six weeks after the death of General Washington, Doctor Brickell wrote an article expressing vehement disagreement with the blood letting procedure. This article was not made public until 1903. Estimating the quantity of blood removed to be 82 ounces - - much less then the amount of blood actually drawn - - he bemoaned the lack of clinical wisdom and appropriateness. "... I think it my duty to point out what appears to me a most fatal error in their plan. . . old people can not bear bleeding as well as the young . . . we see. . . they drew from a man in the 69th year of his age the enormous quantity of 82 ounces, or above two quarts and a half of blood in about 13 hours. Very few of the most robust young men in the world could survive such a loss of blood; but the body of an aged person must be so exhausted, and all his power so weakened by it as to make his death speedy and inevitable." Doctor Brickell was not

entirely against venesection and bloodletting. However, he preferred removal of a lesser quantity of blood from a site closer to the inflamed organ. ". . . to have attacked the disease as near its seat as possible the vein under the tongue might have been opened; the tonsils might have been sacrificed; the scarificator and cup might have been applied on or near the thyroid cartilage."

Subject: RE: Re: Re: Active surveillance now acceptable - who knew?To: ProstateCancerSupport Date: Monday, June 13, 2011, 9:26 PM

Last word from me (for the moment at least) on this subject.

This excellent article sums the way things will go, I hope - . http://www.cuaj.ca/cuaj-jauc/vol5-no3/11076.pdf but I reckon I won’t be around to see itJ

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

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

From: ProstateCancerSupport [mailto: ProstateCancerSupport ] On Behalf Of Sent: Saturday, 11 June 2011 2:01 PMTo: ProstateCancerSupport Subject: Fw: Re: Re: Active surveillance now acceptable - who knew?

As for thinking 20 or 30 years out, I cannot imagine that what passes for PCa treatment today will in any way resemble what PCa treatment will look like 20 years hence. At least I hope that it does not. It would be really regretable if the treatment for this disease remained unchanged over such a long period of time………. <REMAINDER OF MESSAGE DELETED FOR SPACE REASONS>

[Guest guest]

A very good point and a historical one for Americans because that is exactly how our first president General Washington met his end. BOB

http://www.revolutionarywararchives.org/washdeath.html

''The exact cause of General Washington's death has been the subject of much debate by many in the medical profession. Most modern people can not help but think that the blood letting was a major contributing factor. The total quantity of blood removed from General Washington has been estimated to be 5 to 7 pints.''

Six weeks after the death of General Washington, Doctor Brickell wrote an article expressing vehement disagreement with the blood letting procedure. This article was not made public until 1903. Estimating the quantity of blood removed to be 82 ounces - - much less then the amount of blood actually drawn - - he bemoaned the lack of clinical wisdom and appropriateness. "... I think it my duty to point out what appears to me a most fatal error in their plan. . . old people can not bear bleeding as well as the young . . . we see. . . they drew from a man in the 69th year of his age the enormous quantity of 82 ounces, or above two quarts and a half of blood in about 13 hours. Very few of the most robust young men in the world could survive such a loss of blood; but the body of an aged person must be so exhausted, and all his power so weakened by it as to make his death speedy and inevitable." Doctor Brickell was not

entirely against venesection and bloodletting. However, he preferred removal of a lesser quantity of blood from a site closer to the inflamed organ. ". . . to have attacked the disease as near its seat as possible the vein under the tongue might have been opened; the tonsils might have been sacrificed; the scarificator and cup might have been applied on or near the thyroid cartilage."

Subject: RE: Re: Re: Active surveillance now acceptable - who knew?To: ProstateCancerSupport Date: Monday, June 13, 2011, 9:26 PM

Last word from me (for the moment at least) on this subject.

This excellent article sums the way things will go, I hope - . http://www.cuaj.ca/cuaj-jauc/vol5-no3/11076.pdf but I reckon I won’t be around to see itJ

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

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

From: ProstateCancerSupport [mailto: ProstateCancerSupport ] On Behalf Of Sent: Saturday, 11 June 2011 2:01 PMTo: ProstateCancerSupport Subject: Fw: Re: Re: Active surveillance now acceptable - who knew?

As for thinking 20 or 30 years out, I cannot imagine that what passes for PCa treatment today will in any way resemble what PCa treatment will look like 20 years hence. At least I hope that it does not. It would be really regretable if the treatment for this disease remained unchanged over such a long period of time………. <REMAINDER OF MESSAGE DELETED FOR SPACE REASONS>

[Guest guest]

An interesting thought. Legally we are not supposed to give blood you know. Patients who receive organ transplants, tissue transplants, blood transfusions etc. from people who have cancer very often do contract cancer. But, I know of no study that has shown that the blood of a PCa patient can confer cancer to a recipient of the donors blood. And then again, no one cares to find out since when one gives blood it is batched with thousands of pints of blood given by others. This was the mode of HIV transmission that wiped out a good percentage of Hemophiliacs in the U.S.at the onset of the AIDS epidemic. . I personally knew of one such family in which all three of the children contracted the disease through blood transfusion and subsequently died.

There has been a recurring question if one can get HIV from a mosquito ( a vampire of sorts in it's own way) that has sucked blood of someone stricken with HIV. The answer from the medical profession and NIH has always been an authorative ''no''. Yet I have never known of any study that has proven this to be the case. Maybe there is such a study but I don't know of any. What you don't know really can hurt you.

bob

Subject: RE: Re: Re: Active surveillance now acceptable - who knew?To: ProstateCancerSupport Date: Monday, June 13, 2011, 10:22 PM

I wonder if a vampire sucks our blood, will he get prostate cancer? (Just a humorous thought)

Always as close as the other end of your computer to help address any prostate cancer concerns.

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

(Chuck) Maack/Prostate Cancer Advocate/Mentor

Wichita, Kansas Chapter, Us TOO

Biography: http://www.ustoowichita.org/leaders.cfm?content=bio & id=1

Email: maack1@...

Chapter Website "Observations": http://www.ustoowichita.org/observations.cfm

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry HerbertSent: Monday, June 13, 2011 8:27 PMTo: ProstateCancerSupport Subject: RE: Re: Re: Active surveillance now acceptable - who knew?

Last word from me (for the moment at least) on this subject.

This excellent article sums the way things will go, I hope - . http://www.cuaj.ca/cuaj-jauc/vol5-no3/11076.pdf but I reckon I won’t be around to see itJ

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

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

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Sent: Saturday, 11 June 2011 2:01 PMTo: ProstateCancerSupport Subject: Fw: Re: Re: Active surveillance now acceptable - who knew?

As for thinking 20 or 30 years out, I cannot imagine that what passes for PCa treatment today will in any way resemble what PCa treatment will look like 20 years hence. At least I hope that it does not. It would be really regretable if the treatment for this disease remained unchanged over such a long period of time………. <REMAINDER OF MESSAGE DELETED FOR SPACE REASONS>

[Guest guest]

An interesting thought. Legally we are not supposed to give blood you know. Patients who receive organ transplants, tissue transplants, blood transfusions etc. from people who have cancer very often do contract cancer. But, I know of no study that has shown that the blood of a PCa patient can confer cancer to a recipient of the donors blood. And then again, no one cares to find out since when one gives blood it is batched with thousands of pints of blood given by others. This was the mode of HIV transmission that wiped out a good percentage of Hemophiliacs in the U.S.at the onset of the AIDS epidemic. . I personally knew of one such family in which all three of the children contracted the disease through blood transfusion and subsequently died.

There has been a recurring question if one can get HIV from a mosquito ( a vampire of sorts in it's own way) that has sucked blood of someone stricken with HIV. The answer from the medical profession and NIH has always been an authorative ''no''. Yet I have never known of any study that has proven this to be the case. Maybe there is such a study but I don't know of any. What you don't know really can hurt you.

bob

Subject: RE: Re: Re: Active surveillance now acceptable - who knew?To: ProstateCancerSupport Date: Monday, June 13, 2011, 10:22 PM

I wonder if a vampire sucks our blood, will he get prostate cancer? (Just a humorous thought)

Always as close as the other end of your computer to help address any prostate cancer concerns.

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

(Chuck) Maack/Prostate Cancer Advocate/Mentor

Wichita, Kansas Chapter, Us TOO

Biography: http://www.ustoowichita.org/leaders.cfm?content=bio & id=1

Email: maack1@...

Chapter Website "Observations": http://www.ustoowichita.org/observations.cfm

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry HerbertSent: Monday, June 13, 2011 8:27 PMTo: ProstateCancerSupport Subject: RE: Re: Re: Active surveillance now acceptable - who knew?

Last word from me (for the moment at least) on this subject.

This excellent article sums the way things will go, I hope - . http://www.cuaj.ca/cuaj-jauc/vol5-no3/11076.pdf but I reckon I won’t be around to see itJ

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

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

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Sent: Saturday, 11 June 2011 2:01 PMTo: ProstateCancerSupport Subject: Fw: Re: Re: Active surveillance now acceptable - who knew?

As for thinking 20 or 30 years out, I cannot imagine that what passes for PCa treatment today will in any way resemble what PCa treatment will look like 20 years hence. At least I hope that it does not. It would be really regretable if the treatment for this disease remained unchanged over such a long period of time………. <REMAINDER OF MESSAGE DELETED FOR SPACE REASONS>