How has radical prostatectomy affected your life? Any changes?

My QOL is much better 4 1/2 years after surgery.  I had decades old problems with BPH and urinary flow that were resolved with the prostatectomy.  ED was a problem long before surgery and was never an issue.  PSA anxiety has been with me over 15 yrs so nothing new here.  Since surgery I have developed a much healthier lifestyle.  I eat healthy, exercise regularly, take a few sups, and drink a little red wine.  I may easily live long enough for the PCa to become a problem.

Carlos

Interesting to read the number of guys whom had an improvement with their BPH and/or prostatitis after prostatectomy. I have heard this many times over the years and the number is significant to me. These can be factors in excluding seeds as primary therapy in many cases and reasons for complications with external beam radiation I've seen over the years as well. I wonder what percentage of men diagnosed with early stage prostate cancer have one of these conditions. I bet high given the median age of Dx at 67..

I know Dr. Arnon Krongrad, in Aventure, FL, will in extreme cases do RP for chronic Prostatitis. There's a website for it and the members all seem very happy to be rid of the prostatitis even in cases where they still have minor SE's from RP.

I'd guess when you are in chronic prostate pain due to BPH or prostatitis, have issues with ED, and/or self catheterization, and you get a Dx with PCa ~ surgery starts to sound like a two birds with one stone option. I'd understand even in cases where it looks like an active surveillance patient, they elect to move forward with RP because of the other QoL issues.

Tony

Post Edited (TC-LasVegas) : 12/8/2012 2:04:08 PM (GMT-7)

My RP story is a very long one. First, the outcome, so far: My urinary control situation is actually better than before surgery. I was having typical enlarged prostate issues. I would always dribble after urinating. Often, leaving a fairly good size wet spot on my underwear. I was also having urgency and issues starting. Now, although I can once in a great while find a strange move or position that causes a small drip in my underwear, I can safely claim I am totally dry, all the time, with no urgency issues at all. I did have a minor setback during chemotherapy, but that resolved. I do still practice my Kegel exercises to maintain my good status. Regarding ED, I will give myself an incomplete. I have total ED – nothing, zero, zip, nada, nil. But, I had an RP and am also on ADT. My nerves were spared. I will wait until I am done with ADT to see where I stand on ED. For now, I use a VED for penetration and it works well for my wife and me. If this is the best we ever do and I wind up with permanent ED, we will be ok. Our sex life is excellent. It is just different. Because of Kegel exercises, I have very strong pelvic floor muscles. I have “discovered” how to put those to very interesting use in sex. Again, we are doing well in this area. But, I very much look forward to giving it a go with normal levels of testosterone. My pathology report resulted in a serious upgrade. I went into surgery with a PSA in the 50s, but with a Gleason 7 on one side. I came out of surgery a Gleason 9 (5+4), with seminal vesicle invasion. But, the very good news, I had 14 lymph nodes removed – all clear. Surgery Rewind Now, rewind back to the surgery. It was the worst experience of my life. I had the surgery and was in my hospital room. I had bled a lot during surgery but did not need a transfusion. Almost right away, I started complaining that my left side hurt. The nurses said that I had gas. I needed to walk. I did. I went home. My side still hurt a lot. Well, I figured, it takes a while to heal. Days went by. My side really hurt. I had to take Percocet to manage the pain. The PA put me on Cipro, thinking I had picked up a UTI – no improvement. I had a CT scan without contrast – nothing notable. It did not improve. Finally, at around three weeks, I had another CT scan with an iodine tracer. I was in the CT machine. They would scan and wait. There was more scanning and more waiting. I think it took 45 minutes. Then, they finally said get up but do not leave. “They may admit you.” Uh oh! I was told to go home and wait for a call from my doctor. I was home 45 minutes when they called and said I was scheduled for outpatient surgery that afternoon. They were going to try and insert a kidney stent between my kidney and my bladder. My left ureter was blocked and had burst where it connected to my kidney. I was leaking urine inside my body! I went to the hospital. They made the attempt to insert the stent through my back. They failed. I went home that day with a nephrostomy tube in my back and leg bag strapped to my leg. I would have that contraption 24/7 for the next two and half months. When urinating, I had to do it two ways: the normal way and then I had to empty my bag. They waited two weeks to make another stent insertion attempt, hoping the swelling would go down and let them successfully insert the stent. I had a renal scan to make sure my left kidney was still functional. It was! While this was going on, I often felt very cold. I had started Lupron. So, I wondered if that was the cause. I knew about hot flashes but this seemed counterintuitive. Little did I know, I was in for a very nasty UTI. I had the second stent insertion attempt. It failed. They next night, Friday, I was in bed and my wife happened to feel my forehead. She told me I was burning up. I had a fever of 102. Off we went to the ER. They admitted me. By Saturday morning, I was in big trouble. I had septicemia. I have never felt worse. It would take 48 hours to run the urine culture to find the specific bacteria. They were pumping me full of antibiotics. But, I was not getting better. I was having chills that caused me to shake so hard. My wife was scared. My mother was crying on the phone. Finally, on Monday morning, they found the specific bacteria, drug-resistant ecoli, and started me on an exotic IV-based antibiotic. It worked almost immediately. They put a PICC line catheter in my arm (that was fun!) and sent me home. For the next 10 days, my wife had to hook me up to my IV line once a day to get infused with my antibiotic. Well, I still had the nephrostomy tube. We waited until the infection cleared completely and then I had a second open surgery where the surgeon re-implanted the ureter in a different location in my bladder. I had the pleasure of another abdominal surgery recovery and another two weeks with a catheter. The day finally came to have my catheter removed. I still remember this vividly. I got home from the doctor and went to the bathroom. I peed completely, totally, normally. It was the greatest day of my life. I would spend another six weeks with an internal kidney stent to ensure healing. Finally, it was removed and I was past this terrible experience. Postscript What happened? Apparently, during my RP, the surgeons thermally injured my ureter and blocked it at connection to the bladder. It was a bad day when I was sitting in the examining room, in the early phase of this issue, and my surgeon pops his head into the room and states: “I heard you were here. We have a lot to talk about . I will be right back.” Uh oh! He comes in to the room, looks me in the eye, and tells me he made a mistake. He said it was surgical error. My response: ok, now what we do we do to fix it. It was terrible ride, but it was fixed completely. Most of my friends strongly encouraged me to contact an attorney. I never did. Mistakes can happen. I just wanted to be well again. It took 3 months, but I got there. Today, I am none the worse for wear.   And, by the way, I kept working, either at home during recovery, or at the office. I even took a business trip with my nephrostomy tube and leg bag. Life went on. That is my story and I am sticking to it!

I decided on surgery about 2 days after diagnosis. Both my sisters had breast cancer and both told me "get it out".

My surgeon, who has performed more DaVinci surgeries than anyone in the world, over 5,500 at last count, told me he would not do surgery on someone who had radiation. I asked him why? He said because the prostate becomes hard as concrete.

I was prepared that my life was going to change from now on. Side effects of surgery were the price I would have to pay for having the surgery.

So far, I am still not continent, going through ave. 5 pads a day at 4 1/2 months out. I understand it may take a year to get continent. ED is an issue but I have been able to have orgasms and erections 6-8 weeks after surgery. The orgasms seemed to be stronger that before (that has been a welcomed surprise). Dry orgasms are also a pleasant surprise, no mess to clean up.

My diet has changed for the better, I have lost 25 pounds do to diet and exercise. I enjoy walking now. I feel better emotionally as well as physically.

Since the pathology report showed some positive margins, every PSA test I have from now on will surely create some anxiety for me. At least if they find some PC left, I can decide if radiation is something I will want to address.

The Gleason score was raised to a Gleason 7 (see my signature for more details) and the tumor involved over 50% of the gland so I am sure surgery was my best option for me.

Bill

Wow...This is a VERY interesting but frankly a depressing thread. It would be interesting to have a identical thread for those who have had radiation to compare/contrast.

Squirm, you wish is my command.  I started a new thread for the radiation guys to share their comments.

Jim

Early May and it will be 4 years since my RRP...still undetectable.

I have done well, all things considered. Some haven't. I suspect a good portion of those that have done well, probably either won't post here and/or have already moved on.

I had a 5/8 needle biopsy show a fair bit of cancer volume. Pathology was upgraded after surgery. I had an EPE, but was assumed within surgical margins. Clear, otherwise.

No incontinence within 48 hours of cath removal. ED was a problem.

I believe if I had started trimix earlier than 9 months post-surgery, I could be better. At this time, less than half a 20 mG Levitra does it.

Having said that, am I happy? Absolutely, from the point of view of my cancer, so far. Absolutely in terms of incontinence, as I have none.

I consider myself to be one of the lucky ones. Any SE's are easily managed.

Has my life changed? Absolutely. This could come back and can be the monkey on the back of some, including myself...I still get some PSA anxiety.

For those that are new here, I can't tell you anything else except that no one can really predict your particular outcome for sure.

My outcome has been good, so far. I'm happy for that and moving on.

Mike

 

It's without a doubt the worst thing that's ever happened to me.

it's been 2 years since my operation and since I had "normal" sex with my wife. I expect I will never have normal sex again. more than that, the whole feedback cycle of visual stimulation and subsequent excitement seems gone forever. I never had and problems downstairs before this. Now its a big downer. erections are painful. in trying to "use it or lose it" I developed Peyronie's disease. I'm young and angry and despairing that I've essentially sexually aged from 48 to 108 because PCa. It makes me sad now to look at happy and sexy people, because I feel left at the station. I think I would have been better off with no function, rather that 15% function and endless frustration.

With respect to the PCa - so far so good. PSA = zero.

Continence - great from the start no pads. from time to time I've had minor bedwetting episodes. these leave me embarrassed, and depressed and anxious and sleepless for weeks afterwards as I try to make sure it won't happen again. My current protocol is no heavy meals in the late evening and little or no fluids at dinner and beyond.

All these things to follow me around for the next 30-40 years, and I assume as I get older, the problems will get more frequent/substantial.

I apologize to all those who have life threatening situations, for the moment I do not, so this might appear to be a personal pity party. I'm just the only me I have so it's hard to keep perspective. I often think it would have been better to skip surgery, avoid any treatment, and let nature and odds take their course.
I sometimes think 15 more years of a normal sex life would be preferable to 40 years of dysfunction and frustration. I don't even know if I really truly would have gone this way if it were possible to go back and do it over, but I have a lot of second guessing. When you face the surgery choice, cancer seems all threatening. When you fix the cancer part, but get hit with serious side effects, you gained an unexpected permanent and long term nightmare.

The doctors will tell you "98% of my patients can have erections and sex" but what they don't tell you and they don't seem to understand, is that sex with drugs, shots and devices can be like having sex with a triple layer condom on. you did it, but the feeling isn't there.

My life is much like it was before diagnoses and surgery.
Everything that wasn't removed works pretty much like it did before.
I may not rise to the challenge as readily as I did at 21 but then I'm not in as big a hurry either.

I get a bit of leakage when I strain and don't tense in anticipation but not enough to make it more than an underwear issue.

I was able to do a 30+ mile hike in Yellowstone this past summer and that's a plus.

Unfortunately, I required salvage radiation two years post surgery but had no real complications from the surgery itself.

I suspect this thread will not be a happy one. Most of those who pick up and move with no problems on don't stick around in these forums to share the news. If I hadn't needed SRT I'd likely be gone by now. I stick around in case the SRT goes south too.

Post Edited (STW) : 12/11/2012 3:09:31 PM (GMT-7)

Casey,

You started a good and needed thread. And from yours, now we have one for those that had radiation as a primary treatment, and one for those that had radiation as secondary treatment. Between the three threads, we have covered much of the scenerios that most men with PC face. Of course, those with very advanced situations are in an entirely different boat.

These threads should be a good source for future newcomers at HW PC.

Thanks for getting this off to a good start.

David in SC

I'm 5 1/2 months out of open surgery. Going in, my biggest worry was incontinence, and it has turned out to be my biggest issue. At 3 weeks, I was down to 2 pads a day (could have been 1, but I change it before I go to bed). But since then, it hasn't improved. My pads feel dry, but I'll try to go without one and make it 15-20 minutes before starting to spot. Also, I get up 2 or 3 times during the night (never did that before surgery).

As for ED, I was very sexually active pre-surgery (I'm 44), but not so much now. My uro switched me from Cialis to Levitra, and it seems to be working much better. But, getting an erection is more difficult, and maintaining one is much harder (no pun intended) now. As I get close to orgasm, I start going soft. Very frustrating!

This is probably a bad time to answer this, since my surgery failed and I'm now in line for SRT. But to answer the question, my RP had minimal effect on my lifestyle. Other than the first 2 months after my surgery, when I had the usual aches and pains, the only side effect I've had is about a 50% increase in my ED. I was lucky to never lose continence, and the ED has been responsive to Trimix. So, other than that, I would say my RP was a bump in the road (I had robotic).