Re: Re: New York Times piece about sex after prostate surgery (Question for Laurel)

[Guest guest]

Laurel,

Like Mick stated it is up to the patient to take control of the situation. When my diagnosis came down my wife and I became a research team and we ate, drank and slept treatment options and their related impacts. I can't imagine anyone going into a situation that has such a potentially major impact on two major physical functions(not to mention the emotional issues) handling it any other way. I know men can be anal when it comes to taking care of themselves and I am so lucky to have a partner that was by my side every inch of the way. Both my diagnoseing Dr. and the surgeon that did my RRP told me that incontinence would probably not be an issue long term but ED may be and that I needed to be prepared to take something long term if necessary. They were pretty much right so far. The incontinence is not an issue at all but the ED is. I am only eight

months out and I continue to improve but this is the primary conversation at every Dr.visit. If my Dr. doesn't go there(he always does) I do. I just can't imagine anyone dealing with this any other way(maybe I,m anal).

Regards,

Rick

Re: Re: New York Times piece about sex after prostate surgery (Question for Laurel)

Laurel - I only have my own experience to draw from and all I can say is that my little-known surgeon here in tiny little nowhere Nebraska has had a personal 20-30 minute consultation with me every time I went in for my PSA test for the last 2 years. And his plan is to continue this up to 3 years. Every time they ask me how my urine stream is and if I'm having any leakage issues and how my erections are. I don't know how much better it can get than that. I will also give myself a pat on the back here for something equally as important. I took control of my treatment from the second I was diagnosed. I engaged in conversations with my surgeon. I studied and I asked the right questions and I demanded answers. I'd be curious what percentage of men actually do that. In my opinion far too many men set back and just allow the doctor to do whatever they feel is best. Good communication takes

effort on the part of the doctor and the patient. There is no excuse for the men in these studies to not understand what their potential outcomes could be after treatment. Mick yellow_laurel <LaurelFaceaol (DOT) com> wrote:

Hi Mick, I am on two of the prostatepointers. org lists. One of them is PCAI (prostate cancer and intimacy) and as you would imagine, about 95% of the discussion revolves around sex after treatment. The article I mentioned was posted there and a number of men are currently posting about having been, misinformed, mislead, whatever you want to call it by their docs. I did not know until about 6 months ago that when a doctor quotes potency rates they do not differentiate between natural erections and those that occur with medication etc. Our friend who just finished his proton treatment was told by his Kaiser urlologist that IF he had ED problems after surgery that he could "fix it" with a 95% percent degree of confidence. I was not in the doctor's office, so I can't verify. Up until quite recently Kaiser, at least in my area did not have The DaVinci equipment. If you have not read my

message from yesterday (#17778) in which I copied another article which kind of backs up what I said, in that doctors in this country are not talking about sex with their patients. It would seem that many of the prostate cancer survivors either do not report, or under report difficulty with ED to their doctors and lots of doctors are not asking. This leaves the doctors with very inaccurate information with which to counsel new patients. Even Loma does not have any kind of follow up data base regarding side effects. I asked, because I thought it was a no brainer, but alas they do not. All they want from Gregg is his subsequent PSA tests, and they are relying totally on us to take to care of that. No doctor to doctor communication.On a personal note, Gregg has been seeing his urologist for nearly 3 years. He treated Gregg for his bladder cancer and is following through with his post

prostate cancer treatment. I asked Gregg if he has ever, once asked him about his sexual function. He never has. It is as though it is a non issue. I guess he is waiting for Gregg to bring it up. How often every day in doctor's offices all over the country does this scenario repeat itself?So while I do not think that the vast majority of doctors are deliberately giving men bad information, I still think that a rosier picture is painted in many cases than will be the reality of life after prostate cancer treatment.Sorry this got so long. Aren't you glad you asked?Laurel > Members who are contemplating surgery might find this informative. It > is closer, I think, to the truth than what most urlologists are telling > their patients.> > Laurel> > ..last month, researchers from Washington University and New> York University reviewed interim data from their own study showing> that fewer than half of the men who had surgery felt their sex lives> had returned to normal within a year."> > http://www.nytimes. com/2008/ 01/15/health/ 15well.html? ref=science> > > > > >

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