How has radical prostatectomy affected your life? Any changes?

I was diagnosed with prostate cancer at age 49, long story short...prostatectomy left me with mild incontinence and permanent impotence. I would give ANYTHING to have my prostate back cancer and all.
For me a shrunken useless penis and my wifes resulting disinterest, the loss of my sexuality despite trying everything available is simply too high a price to pay. I kick myself for agreeing to surgery every day of my life....I feel irretrievably mutilated.

I can only speak from my experience with surgery and that has been almost entirely positive.  I have nothing but empathy for those struggling with incontinence and ED, but my first and continuing priority is to be cancer free.  Do I wish my prostate was back--you bet I do, but not if it includes cancer.  I remember the short time I had incontinence and the longer time I had ED and it was no fun.  Would my quality of life suffer if I suffered from either or both--absolutely.  But I love my family and my life too much to second guess my choice.  Get busy living or get busy dying is about the only choice all of us have.

Tom

Good thread! I would just like to thank you all for sharing your experiences. I just went through my 3rd biopsy and am awaiting the results. I hope to continue the AS but I'm not going to be foolish about it if the biopsy comes out with significant negative changes.

Both the good and bad stories help me. The good ones give me hope that the outcome of surgery might be fairly positive. Conversely, the more negative ones tell me that if others can handle it then I probably can too.

I had nerves spared rp 6 years ago this Sep. I got a mixed bag: my chronic (15 years) prostatis and BPE was instantly eliminated. I am fully continent. I can now push that urinal scent block a couple inches up the back wall of the urinal. I also have total ED and even trimix and bimix is now hit or miss, mostly miss. I am also waiting for my bio-chemical reoccurance to climb to the level that will trigger salvage radiation therepy.

This is a good thread.  I’m a little more than a year out from my RP, back in May 2014.  Physically I’m doing better than I expected, no leakage or shrinkage.  And I too can piss much better now than before.  But I can only get about 70% of my full capacity erection, (without vacuum and rings or gel).  I’m quite sure all the worry and stress of a recurrence is holding me back and contributing to my less than full recovery.  I’m very fortunate that my wife is so patient and she contributes to the effort more than most would, but I do miss not being able to get busy without all the additional effort.  I still need the ring to hold the erection during penetration.  This can get really depressing if I let it.  It’s just a struggle I’ve got to work thru.  The worrying about something I can’t control, recurrence, is still a big issue with me.

My RP and subsequent radiation has affected my mental state more than my physical health - so far. While I appreciate my good fortune in not having physical problems, for me it's been a very dark cloud over everything for over a year.

Great thread !

Thus far it has been a very small bump in the road of my life. I had more medical issues as a result of having my tonsils removed...

jay1957 said...
I am almost one year post surgery - going back for a check up next month. Very little has changed. No incontinence, ED issues are getting better - almost all of the way back and totally back with Trimix. Glad the cancer is out, but psychologically there is that back in the mind thought of it coming back. I think intimacy is better since having surgery, maybe my wife and I just work at it more now. Physically I am running more now than in the past, but that has to do with retiring!

It is pretty amazing how extremely different different folks experiences can be. But maybe it is not so amazing. I guess it depends on what they have to do in there(G6 vs G8-10 etc) and luck of the draw. Of course many put faith(or at least hope) on having the very best, most experienced surgeons. But even that does not always work out, plus I can tell you that all surgeons have their good days, not so good days, and bad days.

My post - RP experience was very much like Peter's (maybe even less fun) so I won't go into that now. Instead I will tell the story of my followup EBRT following my RARP and during my ADT chemo. Sorry if this is a bit strange.

I am a Taekwondo (Korean Karate) practitioner, have been for more than 45 years. I hold an advanced black belt, haven't been in a Dojang (karate school) for many years now but still practice daily.

When I started EBRT, there was a little Korean lady scheduled right before me, I would see her on the way out as I was on the way in. Every day I would thank her for warming up the table for me, with a big, warm smile. After a few days she had to start chemo too, so her husband showed up in the waiting room to drive her to chemo. (She didn't feel so good after) I thought he looked familiar so I struck up a conversation with him. He turned out to be the Grand Master who had promoted me when he came into town for testings. Every weekday morning for 1 & 1/2 months we would talk, he would ask me to show him how I performed particular techniques and how I would respond to certain situations....a very thorough grilling, actually, and all over the boards.

On the last day of his wife's therapy, he got all serious and told me:

"I live Taekwondo, my whole life has been Taekwondo, I have lived Taekwondo since I was a little boy in Korea after WWII. While we have been talking I have been secretly testing you. Now I have test results for you. You no need to study Taekwondo any more, no need test in Taekwondo any more. You have become like me, you have become Taekwondo. You are Taekwondo graduate black belt." He then shook my hand, gave me congratulations, his wife gave me a big hug and they were gone.

Not a day goes by since then that I have not thought about that experience, it made a major positive difference to me.

On another topic, my wife and I have taken this opportunity to deepen our non - physical relationship and to further appreciate how much we mean to each other as friends and partners. We are going to get through this even stronger than we went into it regardless of my challenges.

Jock, I searched high and low for that thread I started and just cannot find it. I did find a thread started by Purgatory about SRT www.healingwell.com/community/default.aspx?f=35&m=2583429 but cannot find mine.

However if you are interested in starting a new parallel thread now I'm sure you would get plenty of responses since we are even more populated with primary treatment radiation guys now than we were in 2012 - especially the addition of SBRT and HDR patients.

Jim

The day my husband received the call in January 2013 that he had prostate cancer will never be forgotten by our entire family. When we heard the "c" word, we cried for a while, but then went into action mode. The moment my husband spoke to his urologist, he knew that he wanted the cancer out as quickly as possible. He obtained the list of the top three surgeons in our area and off we went to meet them. As it turns out, we never met the third doctor on the list, as my husband scheduled surgery with the first doctor that we met with, then changed his mind after meeting the second doctor. The second doctor performed the robotic surgery on February 20, 2013 (a 3 1/2 hour operation) which upgraded my husband from a Gleason 6 to a Gleason 7, spared his nerves, and the cancer was all contained. His recovery was not easy (he is diabetic and impatient), but as each side effect that came up was dealt with, every day became a little better. All I wanted was to go back to the life we had before pc. My husband thought that he was not going to make it and that he was going to die. It was during those dark days of recovery that I discovered Healing Well and I found answers to so many questions and things that had already happened to him. Although my husband went back to work 3 months after surgery, it took a full 8 months for him to recover. Two and a half years later, he continues to be undetectable, wears one pad a day, improving with ed, and enjoying our life again together with our adult children. My friends, continue to believe in the healing power of laughter, love, and prayer.

Everyone's mileage varies. Three days after surgery I was cheering at a college football game. Two days later I was back to work. 9 days after surgery the blasted catheter came out and I immediately drove 200 miles, with no incontinence, to meet my grandson, who was born the day before. 21 days after surgery I was allowed to return to normal sexual activity (Doc said to wait) and, except for the slight weirdness of "dry orgasms" and the need to remember empty my bladder before sex (or the orgasms ain't so dry....), my life had returned to normal. Why was I so lucky? My surgeon was incredible. But I also think God had pity on me because there is NO WAY I'd be as brave as some of the posters here, who were not so lucky.

Good luck.

Mikey

spottydog10 said...
If I could take my prostate removal back and use different treatment I would do...................................................
Mike

I have long felt the same, Mike. Although there DEFINITELY can be some pretty severe SEs for RT also, it does seem as though they are not as frequent and usually(but def not always) not as severe and long lasting. That is my impression from reading here and talking to friends who went that route anyway. And some of the SEs seem to show up way later with RT, but is that a total negative? True, no SEs at all would be better, but if I could have put some of my SEs off for several years, that seems better than just going with max SEs right up front, and maybe from now on out.