RE: Re Guardian article

[Guest guest]

,

I can't disagree with you more. The uro's have had it their way for too long. Too many men like myself with clinically insignificant PCa have gone under the knife unnecessarily and had their quality of life ruined for the sake of their uro's statistics. Far from being unbalanced this news redresses the balance somewhat. Their are literally thousands of men out there who could otherwise be leading normal lives but for this current trend of 'get it out at all costs' mentality. If this were women having their breasts off unnecessarily boy would we be seeing some law suits. We need a campaign to force these uro's into giving men proper informed choice. I want nothing short of that.

Regards

I sometimes think that the doctors etc who put this out have no idea of the trauma associated with advanced PCa.

This kind of stuff needs to be much more balanced.

There is the nedd for men with low grade PCa to be offered the choice of watch and wait bit... but to headline this in such a way gives the wrong impression.

[Guest guest]

My Gleason was 3 + 3 = 6 Problem is I was like a lot of men, Gleason score meant nothing to me. One comes into this game stone cold knowing nothing. Cancer is cancer sort of attitude and 'get it out'. The uros know this and take advantage of that window of opportunity to spook us out. There is no doubt in my mind that there is probably only one uro in the UK I would trust to take my prostate out ( if I was crazy enough to repeat the experience ) and that would be Kirby. That is why support groups are important. To get to these men before they rush into treatment. One day the truth will out about this malpractice, for that is what it is, and I for one will be wanting compensation for my lost QOL.

Surely,the acid test is the biopsy,if it shows a Gleason of 9 or 10,the prostate is better outthan in.What was your Gleason ?--- coolerking5@... wrote:> ,> I can't disagree with you more. The uro's have had it their way for too > long. Too many men like myself with clinically insignificant PCa have gone > under the knife unnecessarily and had their quality of life ruined for the sake > of their uro's statistics. Far from being unbalanced this news redresses the > balance somewhat. Their are literally thousands of men out there who could > otherwise be leading normal lives but for this current trend of 'get it out at > all costs' mentality. If this were women having their breasts off > unnecessarily boy would we be seeing some law suits. We need a campaign to force these > uro's into giving men proper informed choice. I want nothing short of that.> Regards> > > > > I sometimes think that the doctors etc who put this out have no idea of the > trauma associated with advanced PCa.> This kind of stuff needs to be much more balanced. > There is the nedd for men with low grade PCa to be offered the choice of > watch and wait bit... but to headline this in such a way gives the wrong > impression.> >

[Guest guest]

,

Journalists will always go for attention grabbing headlines, but what heartened me was some of the content. I'm not happy with the "we need a better test than PSA" mantra that seems to becoming fashionable and almost, it seems to me, used as an excuse for not evaluating men properly and guiding them towards wholly appropriate treatment. Of course a definitive test is desirable, but as it doesn't exist (yet) we must use the tools we do have wisely.

A gripe that constantly appears on groups is one of dissatisfaction with treatment advice, and treatment, following diagnosis.

To see UK docs openly saying

"consultants were not making patients sufficiently aware of an alternative to radical surgery, [or] radiotherapy or hormone treatment, [the alternative being] a programme of "active surveillance" that monitored patients through routine testing, and so leaving the option open for treatment if further checks warranted it."

and

"Research has suggested as many as half of men diagnosed do not need treatment"

and

"Prostate cancer is the only human cancer that is curable but which commonly does not need to be cured." gladdens my heart.

The draft Terry flagged up is an interesting read, and expands on the Guardian piece.

.

-----Original Message-----From: Metcalf Sent: Wednesday, May 26, 2004 9:58 AMTo: ProstateCancerSupport Subject: Re Guardian article

I sometimes think that the doctors etc who put this out have no idea of the trauma associated with advanced PCa.

This kind of stuff needs to be much more balanced.

There is the nedd for men with low grade PCa to be offered the choice of watch and wait bit... but to headline this in such a way gives the wrong impression.

>PROSTATE cancer 'cure' warning>Guardian - UK>Thousands of men diagnosed with prostate cancer may be undergoing a cure>worse than the disease, doctors said yesterday. Researchers ...><http://www.guardian.co.uk/uk_news/story/0,3604,1224648,00.html>

[Guest guest]

,

He probably does cheery pick just like Walsh but doesn't that just prove that the whole industry is flawed?

,

When I was diagnosed (01.2000 aged 51, bPSA16.5, T3a, 4+4=8 (subsequently reduced to 4+3=7)) my uro said he would do an RP, so I went out and bought some pyjamas as I didn't have any. I can't remember what motivated me, but I started doing some research and was impressed with Kirby.

At this point I still knew little about other possible treatments, so went back to my uro and asked him to send me to Kirby for a second opinion. My uro rocked back in his chair, stuck his thumbs in his braces, laughed disdainfully, and said "Kirby only gets good results because he cherry picks"!

.

[Guest guest]

/Terry

It is not a balanced article that I am concerned about it is the idea that all PCAs do not need treatment. I am in a slightly different position in that I had an RRP but it was probably just too late for a cure.

Men want treatment at the right time for them. The options must include watch and wait where that is an option.

I have just been trying to check Donna's protocol - but I can't get into the server at the moment.

is right it may be the headline writers who get the emphasis wrong. I would much sooner have seen "Urologists give incomplete advice to many Prostate Cancer Patients!"

Best wishes

[Guest guest]

good point !

,

I don't know about the whole industry being flawed, but I'm all in favour of RP cherry picking. If a doc selects carefully, and refuses to treat those he calculates he can't cure, then he does a service to those he rejects. One worry though, is that some docs might deliberately set the bar too low and reject too many who might have been cured had they been accepted for treatment. One could argue that cherry picking at its best is simply the act of denying a man inappropriate treatment.

.

[Guest guest]

,

When I was diagnosed (01.2000 aged 51, bPSA16.5, T3a, 4+4=8 (subsequently reduced to 4+3=7)) my uro said he would do an RP, so I went out and bought some pyjamas as I didn't have any. I can't remember what motivated me, but I started doing some research and was impressed with Kirby.

At this point I still knew little about other possible treatments, so went back to my uro and asked him to send me to Kirby for a second opinion. My uro rocked back in his chair, stuck his thumbs in his braces, laughed disdainfully, and said "Kirby only gets good results because he cherry picks"!

.

-----Original Message-----From: coolerking5@... Sent: Wednesday, May 26, 2004 2:38 PMTo: ProstateCancerSupport Subject: Re: Re Guardian article

My Gleason was 3 + 3 = 6 Problem is I was like a lot of men, Gleason score meant nothing to me. One comes into this game stone cold knowing nothing. Cancer is cancer sort of attitude and 'get it out'. The uros know this and take advantage of that window of opportunity to spook us out. There is no doubt in my mind that there is probably only one uro in the UK I would trust to take my prostate out ( if I was crazy enough to repeat the experience ) and that would be Kirby. That is why support groups are important. To get to these men before they rush into treatment. One day the truth will out about this malpractice, for that is what it is, and I for one will be wanting compensation for my lost QOL.

[Guest guest]

,

I don't know about the whole industry being flawed, but I'm all in favour of RP cherry picking. If a doc selects carefully, and refuses to treat those he calculates he can't cure, then he does a service to those he rejects. One worry though, is that some docs might deliberately set the bar too low and reject too many who might have been cured had they been accepted for treatment. One could argue that cherry picking at its best is simply the act of denying a man inappropriate treatment.

.

-----Original Message-----From: coolerking5@... Sent: Wednesday, May 26, 2004 4:38 PMTo: ProstateCancerSupport Subject: Re: Re Guardian article

,

He probably does cheery pick just like Walsh but doesn't that just prove that the whole industry is flawed?

,

When I was diagnosed (01.2000 aged 51, bPSA16.5, T3a, 4+4=8 (subsequently reduced to 4+3=7)) my uro said he would do an RP, so I went out and bought some pyjamas as I didn't have any. I can't remember what motivated me, but I started doing some research and was impressed with Kirby.

At this point I still knew little about other possible treatments, so went back to my uro and asked him to send me to Kirby for a second opinion. My uro rocked back in his chair, stuck his thumbs in his braces, laughed disdainfully, and said "Kirby only gets good results because he cherry picks"!

.

[Guest guest]

Well when you see the UK Version of " What Every Doctor Who Treats Male

Patients Should Know " you may be surprised at how it ties right into the

article in certain ways. We discuss how to tell the difference between

pussycats and tigers in regard to the hazards of overtreatment. I'm

wondering if this guy didn't stumble on our document somewhere. <g>

Donna

RE: Re Guardian article

/Terry

It is not a balanced article that I am concerned about it is the idea that

all PCAs do not need treatment. I am in a slightly different position in

that I had an RRP but it was probably just too late for a cure.

Men want treatment at the right time for them. The options must include

watch and wait where that is an option.

I have just been trying to check Donna's protocol - but I can't get into the

server at the moment.

is right it may be the headline writers who get the emphasis wrong. I

would much sooner have seen " Urologists give incomplete advice to many

Prostate Cancer Patients! "

Best wishes

[Guest guest]

Hi ,

Presumably you didn't fancy yourself as a cherry. You went for RT instead so what does that make you - a cabbage maybe ?

This uro of yours who was so disdainful of Kirby, does he have a track record, or is RP a side-line / beer money? Come to think of it , this is coming up to cherry picking time of year out in the woods and one thing to be sure of is that some cherry pickers are a damn sight better at their job than other cherry pickers.

I personally had a very good cherry picker back in 1996 and I am pretty sure surgery managed to get rid of most of the tissue that had been damaged (somehow) and was generating its own growth promoting estrogenic hormonal milieu. In my case I made exactly the right decision to ask an expert cherry picker to do the job for me.

Now the tumour load is down and my natural androgens are up, I get by without treatment as such. Last week I notched up 15 miles on the road and shifted 30,000 kg in the gym. If I had done 1/4 of that a year ago when I was coming off hormone block I would have been very ill from over-reaching, whereas today it is nothing and I deliberately push my weight lifting and running to the limits in order to generate more androgen. More androgen kills pesky prostate cancer cells if they are not too advanced and promiscuous, and our immune system will do the rest of the job with the remainder. Maybe RT also 'does the job' just as well, but I am personally very happy to know there is not a great mass of potentially cancerous tissue down there simmering away.

One thing I regret is not giving HB a better chance during the early days. After nearly a year of very upsetting painful symptoms, without clear professional guidance from my first two urologists, I went for surgery with the third urologist, who was an expert in the field. Thus said I would not go for everyone having RP or RT, they are extreme measures for extreme circumstances. To anyone contemplating treatment for prostate cancer, I'd say in the first instance shrink the tumour down and see what happens to your PSA and urinary symptoms: If all looks well after a year or so then go off the hormonal suppression and get your life back. At this stage, and only if PSA rises without sign of stopping and if symptoms return should you consider more drastic means such as surgery or radiation. It is a fairly simple idea but getting doctors to accept it is another matter. [ My misfortune was to have #1 urologist near to retirement way back in 1996. He probably hadn't been near a book on prostate cancer for a couple of decades. Uro #2 was a different case. He is what can only be described as a shite and had the nerve to ask me for money when I mentioned surgery to him. I'd like to see him in court for gross negligence and corruption. Maybe one day I will have my chance :-] {US and other readers please note that in the UK we pay TAXES to cover medical treatment expenses and a doctor working for the National Health System to be asking a patient for money is regarded as highly unprofessional and a total NONO}

In the mean time re Guardian article and what to do about PC? I'd say the bottom line is to have a second opinion. If there are no symptoms wait at least 3 months and test regularly for androgens. If androgens are low and PSA high then aim to raise androgens. If symptoms are present, or if androgens are high along with PSA rising, then at this stage consider HB, not before. Hope that helps from a street fighting man who somehow got himself mixed up with a bunch of ..

Cheers,

Sammy.

http://uk.geocities.com/prostate.man@.../

RE: Re Guardian article

,

When I was diagnosed (01.2000 aged 51, bPSA16.5, T3a, 4+4=8 (subsequently reduced to 4+3=7)) my uro said he would do an RP, so I went out and bought some pyjamas as I didn't have any. I can't remember what motivated me, but I started doing some research and was impressed with Kirby.

At this point I still knew little about other possible treatments, so went back to my uro and asked him to send me to Kirby for a second opinion. My uro rocked back in his chair, stuck his thumbs in his braces, laughed disdainfully, and said "Kirby only gets good rults because he cherry picks"!

.

-----Original Message-----From: coolerking5@... Sent: Wednesday, May 26, 2004 2:38 PMTo: ProstateCancerSupport Subject: Re: Re Guardian article

My Gleason was 3 + 3 = 6 Problem is I was like a lot of men, Gleason score meant nothing to me. One comes into this game stone cold knowing nothing. Cancer is cancer sort of attitude and 'get it out'. The uros know this and take advantage of that window of opportunity to spook us out. There is no doubt in my mind that there is probably only one uro in the UK I would trust to take my prostate out ( if I was crazy enough to repeat the experience ) and that would be Kirby. That is why support groups are important. To get to these men before they rush into treatment. One day the truth will out about this malpractice, for that is what it is, and I for one will be wanting compensation for my lost QOL.

[Guest guest]

RE: Re Guardian article

,

When I was diagnosed (01.2000 aged 51, bPSA16.5, T3a, 4+4=8 (subsequently reduced to 4+3=7)) my uro said he would do an RP, so I went out and bought some pyjamas as I didn't have any. I can't remember what motivated me, but I started doing some research and was impressed with Kirby.

At this point I still knew little about other possible treatments, so went back to my uro and asked him to send me to Kirby for a second opinion. My uro rocked back in his chair, stuck his thumbs in his braces, laughed disdainfully, and said "Kirby only gets good rults because he cherry picks"!

.

-----Original Message-----From: coolerking5@... Sent: Wednesday, May 26, 2004 2:38 PMTo: ProstateCancerSupport Subject: Re: Re Guardian article

My Gleason was 3 + 3 = 6 Problem is I was like a lot of men, Gleason score meant nothing to me. One comes into this game stone cold knowing nothing. Cancer is cancer sort of attitude and 'get it out'. The uros know this and take advantage of that window of opportunity to spook us out. There is no doubt in my mind that there is probably only one uro in the UK I would trust to take my prostate out ( if I was crazy enough to repeat the experience ) and that would be Kirby. That is why support groups are important. To get to these men before they rush into treatment. One day the truth will out about this malpractice, for that is what it is, and I for one will be wanting compensation for my lost QOL.