How has radical prostatectomy affected your life? Any changes?

In total hardly any. All my parts work like they did before with the exception being I can no longer pollinate fair flowers. Junior works as good as ever. Although my bladder capacity has been reduced by a third, I go to the bathroom less frequently now as I no longer have those frequent urges from a batty prostate. And I never get up in the middle of the night having to pee. Whereas before I did have caancer, now there is a better than fair chance that now I do not. Time will tell. Only problem I face now is the same test to test anxiety everyone else experiences. So far so good. There are things about going through this that I believe made me a better man. For the first time I actually had to consider the possibility that I am indeed mortal. But, through faith, I got a grip on it, and having as good a life as ever.

At almost 3 years post op everything has returned to normal. It took about 18 months to be totally free of any ED issues, but since then my day to day life and activities are just as they were before.

Surgery and the after effects of it were the least eventful part of my fine dealings with PC.

Having robotic RP was a clear decision for me. Would do it again under the same circumstances.

Not a lot in reg life activities have changed for me. I have issues with ED but have found ways to work around that. If I party too hard and have a bit too much to drink I have to be really careful with incontinence. I guess the lesson there in not to drink too much.

On the positive side I am 4 years out and in the zero club. The other comment I have met probably 40 people from HW and have had the privilege to have 2 GFMPH Cajun style gatherings at my home. Also have made friends with people that I will have for the rest of my life.

Cajun Jeff

In the time leading up to my surgery six months ago I was extremely anxious and I made a deal with myself that I wouldn't worry excessively about any bad outcome that I had a better than 83 1/3 percent chance of avoiding. (83 1/3 percent is the probability of a positive outcome playing Russian roulette.) So, I worried about impotence (about a 50/50 shot with my pre-operative moderate ED, despite nerve sparing) and short term incontinence (one chance in three at three months). With my four biopsies showing a very small amount of cancer in only one core (out of a total of 50) the odds that surgery would cure me stood around 90 percent so I didn't worry about that. I thought of myself as a young, vigorous, sexually active middle-aged man and I expected a single night in the hospital and a fairly easy recovery.

It didn't work out that way.

My surgeon is very experienced with the DaVinci machine and he usually books the OR for 3 1/2 hours in the expectation that the actual surgery will take him an hour and a half, leaving two hours for setup and clean up. Since he knew my prostate to be large he booked the room for five hours to be safe and wound up running over his time a bit. My surgeon told me the extra time was required because my prostate was large and some of my vasculature was unusual. What he didn't say, probably to avoid worrying me before the pathology report arrived, was that he found much more cancer than he expected. I was in the hospital for three nights and was in quite a bit of pain the first two days.

My pathology report showed a large GS9 tumor with positive surgical margins, but with no involvement of the lymph nodes (8 taken) or the seminal vesticles. To minimize the chance of recurrence I was immediately put on triple ADT and a few months later I started adjuvant IMRT. I have four IMRT sessions left.

My current status is that I am totally impotent (I use a vacuum device and Trimix injections to keep my hydraulics working), I am incontinent (three or four Depends a day), I am on hormones that crush my libido (and will be for years), I have considerable urinary discomfort and frequent urges (probably from the radiation which I will finish next Wednesday), and I am extremely cranky.

Before the surgery I formulated a "plan" to deal with the expected side effects. I have had to revise that plan somewhat after getting bushwhacked by my post-op pathology. Most of the parts of the plan that deal with penile rehab are still usable. In theory, according to my urologist, "some" of the nerves were spared "mostly on the left side" so I can't rule out the possibility that I might recover some spontaneous erectile ability some day, but since I will be on ADT for two years (plus another year for my T levels to come back up to normal) It will be 2015 before I find out, if I ever do. It's a long shot because the nerves he spared are getting radiated which doesn't help. But most of my plan for maintaining Mr Unreliable is still good. Trimix three times a week to keep things oxygenated and exercised, and a vacuum device four times a week to keep the stretchy tissues stretchy. Unfortunately, with the androgen blockade (the hormones) the penile rehab is less fun than I had expected -- more like a visit to a gym than a private party -- and, in particular, my investment in naughty online movie downloads may not pay off as I had hoped.

The rest of my revised recovery plan is to wait another six months and then talk to my urologist about further surgery to fix the incontinence, assuming it doesn't resolve by then. At the same time I may be tempted to ask about an implant. In theory I should wait on the implant until the Lupron wears off to see what the nerves might do... but I am not getting any younger and I don't want to grow old waiting on a forlorn hope.

I expect to be more or less miserable for the next couple of years while I struggle to have something left of me when the Lupron is done. But I have by no means given up. I work hard at the gym -- I still max out many of the machines and on some of them I use more weight than my thirty-two year old son. So far, have managed to avoid any obvious muscle loss. I have cranked back on my low-carb diet another notch and have managed not to gain any weight so far on the hormone therapy. I try to stay active which helps keep the brain-fog at bay. I simply refuse to give in to the radiation/Lupron fatigue although I do tend to fall asleep watching TV.

Prostate cancer has been hard on my self-perception. I frequently feel old, and pointless, and impotent in every sense of the word. I don't suspect I am unusual in that. Many men report it. Our wives try to console us by telling us that life isn't all about sex. That is true. But what they don't understand is that for a man sex is all about life -- about being so alive that you have extra life to share, to celebrate. There is a very literal biological sense there, to be sure, but there is a psychological aspect to it too. I miss the fire, well controlled, thoroughly tame but nonetheless hot, that used to burn in me. I miss the feeling that my wife could see that fire in my eyes, or feel its contagious heat in my hands when I touched her.

A commenter read a previous version of this posting as saying that I feel less of a man. That's not quite right. I feel manly enough, just not particularly alive. There are dead, cold parts of my psyche and I miss the warmth. But, with any luck I will burn again someday.

Since this thread is about how surgery changed our lives I should point out that my main disappointment with my surgery was that it failed to save me from the hormone therapy which I hate. When I looked into my options for primary treatment, one of the main attractions for surgery was that, if it worked, it wouldn't require hormones. Because of my large prostate all the other therapies started with six months of HT to shrink it so it could be zapped or seeded or cooked with ultrasound. Surgery was my best shot at dealing with the problem without hormones. It didn't work out that way but I don't regret the decision. It was worth the shot.

I cling stubbornly to the hope that in a couple of years I can resume my interrupted vigorous middle-age. I just have a crummy couple of years to get through. It started with my surgery but my surgery didn't cause my problems. It just made them clear.

At 2 years post DaVinci I still have ED. I have been patient and hopeful of a full recovery but now I am feeling depressed that I may never get a natural full erection again. I miss it! Fortunately I still have a sex life with my wife and she has been great but it just isn't the same. I feel like I have been robbed.

Has there been any long term QOL studies on RP outcomes?

I cannot ejaculate.

Ability to obtain and maintain an erection is diminished, but it works, usually.  Before RP it was automatic.  Now the planets have to be properly aligned.

Some incontinence when I bend over sometimes, but not of any significance.

Increased sciatic nerve pain.  The positioning during surgery aggravated the pain.  After 6 years, the pain has not reduced to the pre-surgery level.  This is by far the worst side-effect for me.   

Meant to add, I believe my open surgery was about 4.5 hours, perhaps a little longer due to the complications. But no blood loss, even though I had 2 units banked in case.

I did fine with my surgery. It was robotic, by a well respected surgeon, at a great institution, and the plumbing part went well. It was my pathology that was life changing. With bilateral seminal vesicle invasion and the surgeon stating his concern was stage IV. It was pT3b and I have been in remission since the surgery. I still believe that the added adjuvant therapies have worked out well. No significant side effects from radiation. The hormonal therapy was a pain but I did well, on a vacation now.

I think being young was a big reason for me to tolerate all of the therapies. At 44 when this all got started I healed quickly and so far the cancer has cooperated.

I was more moved when I came here in December of 2006...

Tony

6 months after surgery I reckon I was just about where I had been before diagnosis, so continecne fine both day and night, erections on demand, but had next to no orgasm, that was a big deal, also I leaked pee if sexually aroused.
Turns out I have unusual skin on my abdomen so have developed keloid scars from surgery. I don't mind that the scars are red and swollen, but don't enjoy the fact that they often itch and hurt more than three years on.
I'm now also two and a bit years on from SRT as well and am now coming to terms with the effect of that on me too:
I can deal with the dribbling by using pads, but have started getting a rash on my penis, and can only just manage to go pad-free at night.
Also have more bowel movements, and that can only be dealt with by planning my day to include being near decent bathrooms or to be at home.
I can still get erections, but takes more time and not as firm and dribble more pee. Still no orgasms.
So biggest change is my sex life. I used to be a five times a week guy, now I'm hardly a once a month guy and the pleasure is all my wife's not mine.
But I'm in the zero club and hardly ever think about the actual cancer aspect of my situation.

(As for how long my surgery took - I was in my hospital room talking to my wife at 11am and back there again talking to her at 4pm. So in 5 hours they prepared me, operated and had me in recovery too. The actual surgery was a bit less than 3 hours as far as I know.)

Alf

Post Edited (English Alf) : 12/8/2012 5:25:11 AM (GMT-7)

Since this thread is intended more as a collection of stories than as a conversation, I edited my posting in place to respond to some confusions I introduced about the duration of my surgery and to make a stronger statement about the effects of prostate cancer treatments on a man's feeling of manliness, whatever that is.

The revised version is above.