Re: Erectile Dysfunction After RRP

[Guest guest]

Thank you very much - I liked the quote about Turkeys not

voting for Christmas- they probably would not vote for Thanksgiving

either. I am sure that some of the urologists who specialize in

surgery are becoming a bit worried.

Aubrey

,I don't think Aubrey condemns men who choose surgery either, he is merely expressing a view, formed over many years, that there are, for most men, better alternatives to surgery. This is even more true today with treatments such as HIFU, brachy and cryo. Our group recently had a demonstration of the HIFU procedure and the guy giving the talk said he had recently given a lecture to 200 urologists and only about a dozen of them showed any interest at all in HIFU. Like he said 'Turkeys don't vote for Christmas' The final decision on treatment should always rest with the patient after very careful examination of all the treatment modalities. At the moment we do not have a level playing field and the likes of Aubrey serve to redress this imbalance.Regards

[Guest guest]

Aubrey,

I think the game is up for the uro/surgeons. They will have to be dragged kicking and screaming into the 21st century. What a perfect example of the Kings new clothes it all was. Gold Standard ? More like Fools Gold.

My best

[Guest guest]

No one can deny that at times men are not given a level playing field when it comes to treatment options. Many take in good faith the advice given to them on diagnosis which at best is biased. Informed choice is all I ask. OK so many men are happy with their surgery but a lot feel that they were misled and some of course are suffering from cognitive dissonance. Besides they have had their treatment, my 'bashing' as you so succinctly put it, is not aimed at them but at the poor suckers who are just coming into the game.

Also I don't need to be gagged by someone who will never be on the receiving end of the deception shown by some of these uro's. I've been there, I'm wearing the T-Shirt and the diapers so I think I am qualified to pass an opinion thank you very much!!

[Guest guest]

Please stop the bashing. If you have something constructive to say OK but how is this at all constructive or informative. There are men out there who have chosen surgery and are happy with their choice, Statements like this are just as insulting to them as it is to the doctors that you are slamming. You may find this fun but surgery as an alternative isn't going anywhere and there are good and bad doctors doing all treatments. Men have good and bad outcomes from all treatments.

Please can we get into something more productive.

Kathy

-----Original Message-----From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of coolerking5@...Sent: Saturday, December 10, 2005 6:26 PMTo: ProstateCancerSupport Subject: Re: Erectile Dysfunction After RRPAubrey,I think the game is up for the uro/surgeons. They will have to be dragged kicking and screaming into the 21st century. What a perfect example of the Kings new clothes it all was. Gold Standard ? More like Fools Gold.My best

[Guest guest]

Thanks Kathy - I agree. There are people who have chosen surgery for good reason, as I had to. I re-iterate we give the newly diagnosed information and support them whateever their choice. We can only say that given the choice again which path we would choose. Ask the cows in the field though, the best grass is just out of reach. So is the best treatment. We have to make choices. The one piece of good info from this is, don't talk to one medical practioner. They will all say their method is best.

I don't mind factual discussion but what if we found that surgery was the only option to remove all PCa stem cells if they are contained in the capsule. If all the rest just killed normal cells just to reawaken a few years later and show themselves with rising PSA.

RE: Erectile Dysfunction After RRP

Please stop the bashing. If you have something constructive to say OK but how is this at all constructive or informative. There are men out there who have chosen surgery and are happy with their choice, Statements like this are just as insulting to them as it is to the doctors that you are slamming. You may find this fun but surgery as an alternative isn't going anywhere and there are good and bad doctors doing all treatments. Men have good and bad outcomes from all treatments.

Please can we get into something more productive.

Kathy

[Guest guest]

Bedtime now but just before I go I have to say the urologists don't contribute to the group and can't defend themselves.

As with any group there are rogues and it looks like you got one.

There are others who give lots of other contacts for other options.

It is like saying all bulls are black so all black cows are bulls

Not all urologists offer only surgery.

Even for my regrowth a few months ago the urologist talked through the surgery option with me and then put me on to the radiation oncologist from Cookridge. In the end we all decided to opt for surgery and later I saw both consultants in a follow up clinic.

With specialist nurses and change of heart many Uk hospitals now have a totally different going on than the bad old days of yesteryear.

I knwo you and Aubrey have had a bad time and I feel for you, but please don't assume all urologists have the same outlook

Re: Erectile Dysfunction After RRP

No one can deny that at times men are not given a level playing field when it comes to treatment options. Many take in good faith the advice given to them on diagnosis which at best is biased. Informed choice is all I ask. OK so many men are happy with their surgery but a lot feel that they were misled and some of course are suffering from cognitive dissonance. Besides they have had their treatment, my 'bashing' as you so succinctly put it, is not aimed at them but at the poor suckers who are just coming into the game.Also I don't need to be gagged by someone who will never be on the receiving end of the deception shown by some of these uro's. I've been there, I'm wearing the T-Shirt and the diapers so I think I am qualified to pass an opinion thank you very much!!

[Guest guest]

I'm quite offended by your remarks! This is a support group not a place to bash one treatment over another. These aren't poor suckers "coming into the game" as you say it. These are scared individuals that are reaching out for help and trying to sort through a maize of information about a disease they knew nothing about yesterday. I'm about to have surgery next month. If things don't go well for me, I will be right on here telling my story. The difference is that I won't be saying "I wish I would have" and I for sure won't be saying those who choose surgery are all fools! I'll simply be saying it didn't work for me and I hope it works for someone else. I'll be saying that because it's a cold hard fact that just because a procedure didn't work for one person doesn't mean it won't work on hundreds of other people. How about from now on we try to give opinions without letting our anger get

in the way? I for one don't appreciate it. Mick coolerking5@... wrote: No one can deny that at times men are not given a level playing field when it comes to treatment options. Many take in good faith the advice given to them on diagnosis which at best is biased. Informed choice is all I ask. OK so many men are happy with their surgery but a lot feel that they were misled and some of course are suffering from cognitive dissonance. Besides they have had their treatment, my 'bashing' as you so succinctly put it, is not aimed at them but at the poor suckers who are just coming into the game.Also I don't need to be gagged by someone who will never be on

the receiving end of the deception shown by some of these uro's. I've been there, I'm wearing the T-Shirt and the diapers so I think I am qualified to pass an opinion thank you very much!! "If you think you are going through hell, keep going" - Winston Churchill

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[Guest guest]

Ok Mick,

Good luck with your surgery next month but let me tell you now that the perception of it may be quiet different from the reality so please do come back and tell us of your experience. I hope you have looked at the alternatives because if you have insignificant PCa you may be better served by looking at them again. I can't promise I won't say 'I told you so' a few months down the road but good luck with what ever you do.

Many men are 'suckered' into surgery because they are 'scared and reaching out' as you put it and that is the tragedy in all this. It is when they are at their most vulnerable that they are sometimes deceived. If you think that RP is a walk in the park and everything is going to be hunky dory afterwards then I hope it stays fine for you because RP is major surgery and everyone is different and one thing is for sure your life will never be quiet the same again. Over the years I have seen plenty of your sort come and go, standard bearers for surgery, and pre surgery comments like "I've had all the information I need from the hospital" and "I'm not bothered one iota about incontinence and impotence all I want to do is get it out" ( These are not made up comments BTW these are comments made to a support group ) A couple of months post RP the same guys. " I wish someone would have told me about other treatments" and Does anyone know how long I should expect to wear pads?" and " I've tried Viagra and it doesn't work, has anyone here had any luck with penile injections?" This Mick is the REALITY of RP what you have been reading is probably the Walt Disney version.

[Guest guest]

Aubrey,I think the game is up for the uro/surgeons. They will have to be dragged kicking and screaming into the 21st century. What a perfect example of the Kings new clothes it all was. Gold Standard ? More like Fools Gold.My best

Thanks - I am sure that eventually they will have to accept it.

I wish you all the bestAubrey