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another reason to think twice prior to surgery--Peyronie's disease

marge
Posts: 8
Joined: Feb 2010

I read this new report from the prostate cancer info link, doesn't surprise me, and believe me it is the worst possible disease, it's an autoimmune disease where the body attacks the penis. This report says the risk after RP increases by double or three fold.

Peyronie’s disease (PD) is a clinical condition characterized by an upward curvature of the erect penis. It is known to occur with regularity in men between about 45 and 75 years of age. A thorough overview of this condition by Lizza can be found on the eMedicine web site.

What we really don’t know so much about includes:

The true incidence and prevalence of PD
Exactly what causes this condition
Whether there is a specific association between treatment for prostate cancer (by radical prostatectomy) and increased risk for PD.
Because reported cases of PD occur with highest frequency in men in their 50s and 60s (the same age range as that at which prostate cancer starts to become common), there has long been a strong suggestion that there is an association between treatment for prostate cancer with radical prostatectomy (RP) and risk for PD. However, the actual evidence that RP increases risk for PD has been very limited.

Historically, PD was not something most men rushed to their doctors to talk about. It’s symptoms may be mild and have little impact on men’s lives. It may be preceded by erectile dysfunction. It is also commonly preceded by and associated with painful erections. But it is an embarrassing condition for most men, and so if they have never been to their doctor for another urological condition, they may only mention this when it becomes a significant problem.

Thus, from an epidemiological point of view, all we really know is that the reported rate of PD in men as a whole is around 0.5 to 3 percent, although Mulhall et al. reported a prevalence of 8.9 percent in a series of men being screened for prostate cancer.

Tal et al. have now published detailed data on the incidence of PD in in a series of > 1,000 patients after radical prostatectomy for prostate cancer and have made an initial attempt to determine possible predictors of the occurrence of after an RP.

Between 2000 and 2008, researchers at Memorial Sloan-Kettering Cancer Center developed a sexual medicine database, focused primarily on men who were treated with an RP as their primary therapy for localized prostate cancer. Tal et al. then used this database to identify patients who developed PD within 3 years of their RP and compared them with the patients who did not.

The results of this study show the following:

The total study population included 1,011 men who had received and RP as their only treatment for localized prostate cancer.
The incidence of PD within 3 years of treatment in this population was 15.9 percent.
The average (mean) time to development of PD after RP was 13.9 ± 0.7 months.
The average (mean) curvature was 31 ± 17 degrees.
Younger age showed a somewhat higher risk (hazard ratio [HR] = 1.3) for PD after RP.

White race showed a much higher risk (HR = 4.1) for PD after RP than non-white.
Post-operative erectile function was not a predictor of PD development.
The authors conclude that, “Men presenting with sexual dysfunction after RP have higher PD incidence then the general population” and that “Younger men and men of white race are at increased risk for PD” after an RP.

However, it is notable that the authors still do not conclude from this study that RP is a specific cause of PD. Indeed, they state specifically that additional studies will be needed “to conclude if RP has a causative role in the pathogenesis of PD.”

There seems to be little doubt that RP is at least a potential and significant risk factor for PD in some groups of men, and the authors recommend that RP patients should be monitored post-surgery for PD. Having said that, it should be noted that effective treatments for PD are limited in their value, and most men with PD should be carefully monitored in the early stages of the disease as opposed to taking any immediate, radical steps to correct the condition.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Marge:

I think we can all agree that the Mayo Clinic is a world class institute.

Perhaps you might want to check out this mayo clinic article on peyronies diease found at
http://www.mayoclinic.com/health/peyronies-disease/ds00427/dsection=causes

Mayo states "The cause of Peyronie's disease isn't well understood, but it's generally considered the result of a wound that doesn't heal properly. The wound is most likely minor trauma to the penis during sexual activity. For example, the erect penis might be bent during sexual intercourse. A wound could also be the result of an accident or sports injury."

Trying to link this disease to RP patients is really a stretch in my humble opinion. You even say that the authors still do not conclude from this study that RP is a specific cause of Peyronies Diease.

Based on your reasoning perhaps we should all give up sexual intercourse and not just Prostate surgery?

Mayo also list Heredity, AGE, tobacco use and Diabeties to likely causes.

Thank you so much for my laugh of the day!

Larry

ejn's picture
ejn
Posts: 64
Joined: Jun 2010

I also think this to be quite funny. I had PD for awhile years before I was dianosed, it was the cause of a problem during sex just as lewvino wrote. The article posted by Marge appears to have some kind of agenda. Just my opinion. Thanks

BRONX52
Posts: 156
Joined: Apr 2010

YOUR AGENDA SEEMS OBVIOUS. YOU SEEM INTENT ON SPREADING A DOOM AND GLOOM PROGNOSIS FOR THOSE WHO HAVE TAKEN THE SURGERY ROUTE OR ARE CONSIDERING IT. I AM NOT SURE WHY.I THINK YOU KNOW THAT ALL TREATMENT OPTIONS CARRY AN INHERENT RISK OF ONE SORT OR ANOTHER. YOUR SLANT ON SOME OF THE TREATMENT OPTIONS HAS A HINT OF BIAS IN IT. I BELIEVE THAT IT IS BEST TO LEAVE PERSONAL BIAS OUT OF THE DISCUSSION AND SUPPORT WHATEVER DECISIONS THOSE ON THIS WEBSITE MAKE REGARDING THEIR TREATMENT OPTIONS. WE SHOULD BE THE CHEERLEADERS AND NOT THE HECKLERS. WE WILL DO THE RESEARCH, GET SECOND OPINIONS, AND MAKE INFORMED DECISIONS ACCORDING TO OUR OWN INDIVIDUAL CIRCUMSTANCES. THOSE OF US WHO CHOOSE TO PARTICIPATE IN THIS FORUM ARE HERE TO SUPPORT THOSE INDIVIDUALS AND THE DECISIONS THEY MAKE. WE ALL HAVE A COMMON ENEMY AND A COMMON GOAL. DEFEAT PC !!!

Trew
Posts: 891
Joined: Jan 2010

I have enough problems, I'm staying out of this one.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Because I will be attacked for "selling surgery" LOL However, I did almost fall out of my chair laughing when reading the psuedo artical Marge, Hifu gal or whoever the heck she is posted...BTW, she never did respond to my asking to post a picture so we all could see who we are talking with....They need an "ignore poster" feature on this site. LOL

Randy in Indy

mrspjd
Posts: 688
Joined: Apr 2010

Randy,
This post will not address the subject thread as it has been well addressed by Larry, aka lewvino, Bronx, and others. However it is important to make a few comments about "assumptions," "generalizations" and "stereotyping" here. Most of us try to maintain some degree of anonymity on the discussion board. You don't know for a fact that I'm female anymore than I know you're male. Guess you'll just have to take my word and trust that I am female, as I will trust you're male. User names, such as the mostly female name "Marge," and poster's pictures will not guarantee one's gender to be what they appear to be since anyone can use any name (male, female, dog--"Fido," "Spot," etc.) and post any picture (male, female, dog, cat, etc.). For instance, how do I know for certain that you're not the female in the picture you've posted. For the record, I choose to believe you're the male.

From what I can tell, as one of only a handful of female posters on a mostly male PCa discussion board, I take exception to your assumption that Marge is a female by your references to "she" and to "her" also possibly being "hifu GAL." I already feel that to some extent, not being able to comment first hand about PCa, somewhat diminishes my credibility here and by assuming Marge is female, it further discredits those of us females who continue to post here about our second hand, but real, experiences with PCa and the men in our lives who we love.

Other than Marge's "username" being a mostly female name, to the best I can determine, he/she has never revealed their gender and I don't expect him/her to do so. In fact, many of Marge's posts, in another thread, reference his/her first hand experience with RP, as well as reference to his/her personal doctor. Marge may well be a male, but whether Marge is female or male, we may never know. In the meantime, perhaps we can be aware that most of the time we don't know who we are "speaking" to here. In all fairness, I believe you are well-intentioned, and I respectfully suggest that if you choose to refer/respond to "Marge" in the future, we might address Marge as "he/she," "his/her" or just plain "Marge" rather than make gender assumptions with respect to all, male or female, who sincerely post here.
mrs pjd

BRONX52
Posts: 156
Joined: Apr 2010

I HAD TO SMILE AFTER READING YOUR POST---I TOO HAVE WONDERED MANY TIMES, WHO AM I "REALLY" TALKING TO. BUT I FIGURED THAT THIS IS A SERIOUS SUBJECT AND THEIR REALLY IS NO NEED TO DISGUISE YOUR IDENTITY----BUT YOU NEVER KNOW---HAHA !!!

lion1
Posts: 239
Joined: May 2007

Good point Bronx. Last year we did hire a person from out of state, and when I first heard the name I assumed the person was a Male----after all the person's first name was "Wallis". After talking to there perspective boss I was told that Wallis was a woman. Even though I assumed she was a guy by the name. So you never know.

But, I do agree with you most folks won't disguise their identity, because these are serious issues we deal with here.

With that being said......

Lion1---male

If I was female I would definitely post as Lionness1

142
Posts: 169
Joined: Dec 2009

Mrs. Wallis Simpson caused the abdication of Edward VIII in the UK before WWII. We are allowed to forget some of our many days spent in what we thought was ancient history ;)

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Point well taken and I do not mean any harm to anyone here, although, when I smell something fishy I will point it out...and again it's only my own personal opinion which anyone and everyone can take or leave. I hope you are not suggesting I am somehow against a gender in this formum, as that would be totally incorrect. I am very glad anytime I see a female on this board taking the interest in her man's predicament with this beast. In fact one such person I have met on this very discussion board will be staying with us next weekend for a family party and get together.

Life is too short to dance around issues and waist time playing footsie especially with this serious subject. I will continue to say what is on my mind and be truthful and frank when I post here because I find that way I sleep very well at night...always have and always will. My frankness for some is too much to take but for others who want it like it is...they welcome it because I know there are people out there just like me who value the truth and try to protect it just like I do. I really have no use for anyone who trys to decieve or mislead others with false statistics and half-truths or someone with a specific agenda again especially in this realm that should be open and honest with no agenda other than helping others to learn and find their path to fight this beast the best possible way. Seriously, a topic headline like this "another reason to think twice prior to surgery--Peyronie's disease" just SCREAMS agenda within the title itself, don't you think? A laughable far reaching stretch at even trying to point people away from surgery...but a pointed agenda none the less.

I will honor your request and only refer to Marge as Marge. Wouldn't it be interesting to have IP addresses identified with each poster ID?

Randy in Indy - definately a male

142
Posts: 169
Joined: Dec 2009

I agree with you, and the quest against spammers. Do remember that some of us have reasons to remain generally unidentifiable, so no picture for me.

Anyone with a valid or perceived reason to argue a treatment will get a better reception if they start with "here is my story -". I would have read the article with a much better starting frame of mind if it had simply been titled "Peyronie's disease".

And yes, I had a prostate to remove, so gender is a given.

BTW - glad your recovery is going so well, and that you continue to post.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

that some like to remain annonymous and respect that for whatever their reason is. I have always been pretty much an open book my whole life and like where that has taken me...I am very comfortable with who I am...wish I could lose a few more pounds though. I don't know when I will quit posting here...but I will come back in ten years (God willing) to post my current state. Now it's time to get outside and do some more work on the project.

Thanks for the vote of confidence 142/male!

Randy

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