FrankTalk.org

I am new to this site and I hope that I am doing the right thing in these discussion groups. I am a now 57 year old retired RN. I worked at Memorial Sloan- Kettering Research Center in NYC many years in the Urology dept. I move to San Francisco in 1995. Diagnosed with prostate Cancer when I was 51, surgery with the DaVinci Robot when I was 52.( 5 years ago).Having surgery is the biggest regret of my life, but the damage done to me lingers on in my mind on a daily basis.I see everyone talking about erectile dysfunction, things to try to fix the dysfunction. But no one ever talks about something that affects 42-50% of ALL patients who have surgery for this cancer, whether it was the old fashioned removal or the robot, statistics aren't much different. Google " Penile Shrinkage Post Prostatectomy" and see the many articles have been written about this. I know that men hate to talk about this and a very low percentage ever talk about this to there doctors. I hope that there will be a discussion about this. I plan to write more about my experience if guys are interested.
Buck Winston

it would be great to hear what you have to say! Also any counter things to hav e done to offset the damage.

Buck,

Welcome to FT. I think if you will find from past and future posts that a LOT of attention is given to the very issue you highlight. Read some of the old posts when you have time and stay tuned. The topic of shrinkage come up (ha ha ha) often and we could all benefit from your thoughts. Also, come join the discussion in the Chat Room when you get a chance. I appreciate those free-wheeling discussions as much as I do the posts.

For sure, I think there are two things you can take from the guys on this site. First of all, you are not alone. Secondly, there is at least one workable solution to what ails you.

Look forward to hearing more from you,

Greg

Buck:

Welcome to the clan! It is good to have you amongst us. This is a good, open place where we all face the same issues regardless of etiology. There is a lot of experience here.

You are spot on!! Penile shrinkage is a big bad, dark secret the surgeons don't want to talk about. It is real and I wonder if your stats aren't low. There is something wrong in the procedures and the doc haven't bothered to study the issue. When I raised the issue with my surgeon he commented that I probably had put on weight. I was so dumbfounded that I neither slugged him or could ask another question. Ah, he and I no longer see each other. . .

Please post away. We need fuller discussion on this matter. As you may know we have just formed a Foundation for ED. I hope that as funding becomes available we can have this issue researched. But first we, as a start-up, must get financially stable. Probably the docs don't really know themselves. The worst part is we guys are not talking about this- most difficult to offer the medical fact that you have a shorter c ck than before your surgery. . . . And, frankly, with the ED issues it is difficult to be exact in the stated loss. But, I KNOW I have a loss and others here have also experienced the same problem. I do have a theory on the possibly cause of our loss but not being medical I'm not in position to posit.

I'm going to follow your recommendation and will look at the Google site.

There are some things we can do to mitigate the situation and I am trying pumping and stretching exercises; they seem to be helping. I'm sorry to hear you are so dissatisfied with your surgery. My experience was much different and it was amazingly easy and a very quick "surgery" recovery. This ED side-effect is an entirely different matter and that is why I'm here. But, the PCa is gone- 5yrs next month and that is a good thing.


Again, welcome and please educate us. As Greg said feel free to join the chatroom. This is a good place.

Regards,


Dick

It would be very helpful to understand how this develops with time.
BuckWinston, would you say your penis size has stabilized over time or is it continually shrinking?
I would like to hear from patients who are 5, 10 or more years post-RP if they feel that the stretched or erect penis continues to shrink and narrow but people seem to entirely give up on their penes a couple of years after RP. The academic studies of shrinkage stop at 12 months, I don't know if it gets too scary after that.

Hello Buck,

I read someplace initial shrinkage may be a result of the operation to remove the prostate. The urethra running through the prostate has to be removed with the prostate. The bladder is pulled down toward the shortened urethra to make up the space and sewed together. The bladder wants to go back to it's normal position farther up the line and pulls the penis with it.

I'm having discomfort with the turtling effect. I was circumcised as a child but every once in a while (too often) you wouldn't know.

I see you posted this last year so I'm hoping everthing is working out.

Thanks,
Mike

I have read that the penis does shrink with age. Not only does a prostatectomy have an affect on the penis, but it also could be Peyronies that strikes many males as they get on with age. ugh. Medications that one takes for various health issues could result in shrinkage. In my case it was Peyronies that determined my decision to have an implant. There are so many variables that have to be considered and Franktalk will give you various situations which you can find very helpful. Bottom line is to inform yourself about your particular problem. Good luck.