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Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Jim,

After my robotic RP, I had no control for about a day. After that, I needed one super pad per day for about a month, then one thin pad per day for another month. My only problem in the year since then is that I must be sure to empty my bladder completely and wipe with toilet paper or I will drip. I did have two instances of waking up wet but in both cases I was under great stress (one time was after hernia surgery and the other was after learning that my RP was botched).

As for erections, I had a few partials soon after surgery, then nothing. I tried Viagra and only got a headache and blue vision. Levitra started to work but I had to discontinue that when I started with the hormones and radiation.

Incontinence and erections are nothing compared to a painful death. Treat the problem quickly before it gets a chance to spread. While I cannot recommend the Da Vinci (due to my experience), you have to choose something. I know it's taking a step back, but if I had it to do over again, I'd choose an old fashioned open procedure.

Paul A from RI

Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Jim,I had the Robotic surgery January 25th 2008. I also used thick pads for about 3 weeks. I was always dry at night. Then I went to a meduim pad for about 2 weeks, then to a thin pad. Around the middle of March, I stopped wearing pads all together and similar to those above, I only have a drip if not emptying completely. My uro gave me a bunch of samples of the blue pill. some 50mg and a bunch of 100's. I cut the 100's in half. They work pretty well, I do get a sligh headache, but not all the time. All in all, I am very pleased with the daVinci surgery and would do it again. The quality of life is MUCH better than before. Refering to the really weak stream, having to go all the time with uncomfortable urgency and lots of dripping after going. Like the others also said though, everyone is different. I think my wifes positive attitude and lots of excersise had lots to do with the success.
We wish you the best of luck. Email me id you have any further questions.
Lee RSM, Ca. USA

Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Sharing my experience, I had robo surgery on January 9, 2008. I wore one thin pad everyday for 2 months afterwards. I never had much leakage. I gradually gained more confidence in going without a pad and after 4 months, I never wear a pad. I am almost 100% on this front.
On the potency front, I am not able to get or maintain an erection sufficient for penetration. Per my local uro, I take Cialis every 3 days and any day I want to try to have sex. I also use a vacuum pump almost daily per the doc's instructions. The pump and use of a constriction ring make penetration possible. Overall, I am dissatisfied with my inability to maintain an erection without the pump. My uro is moving away and has referred me to someone who specializes in Ca P ED. I hope things get better over time.

Given the above, I still think I would have chosen to have the robo surgery. Living with the cancer is difficult; even after the surgery, in the back of my mind I think it will return and I dread having PSA tests. However, it surely would have driven me crazy to have waited.

I wish you the best in whatever you decide. Good luck.

Re: Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Will,

I can relate to what you are saying about the prostate cancer coming back. I had robotic surgery on 4/08/08 and will have my 1st PSA drawn on 5/16/08 to check my levels. I too wonder if the doc got it all out. I have seen the doc and he went over my path results( All contained), but a part of me wonders and worries about the PSA test results. Guess I'll have to wait and see...

Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

I had my catheter out today, the doc thinks it should be soon. i am tracking this CLOSELY, but at 46 with no previous symptoms, it shouldn't take long.
my 2 friends, 54 and 62 have some level of erection WITHOUT medicine after 6 months, " firm" with meds sooner.

mike

Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Good luck Mike. It feels good to get the catheter out. I think nerves take much longer to reconnect/heal after surgery. Muscles control our bladders and I think that is why we have a much lower rate of incontinence compared to ED. I'm at 4 months and have seen some improvement; I just don't know what the end result will be.
Hang in there.
Will

Re: Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Thank you Will. I had a 3 "nappy" day yesterday and grabbed one of my "feminine pads" to wear today as the leakage has nearly stopped. Only when i strain do i leak. Very controlable. So Jim, don't worry about the wetness. The "stiffness" comes in time.

Mike

Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Jim,

You should ask you Dr. whether he/she tracks the outcomes of all patients and what the side effect rates are for someone with your profile.

I had my Surgery with Dr. Wagner in Hartford last month and his practice has a database with several thousand patient in it. Here are the statistics he gave me.

On average, in the first month a person will use 3 pads/day. At 3 months it will go down to 1-2 pads and at 6 months it will be one.

1/200 will have a serious incontinence problem that requires another procedure and 3/100 will have a bladder constricture requiring surgery.

I was a luck one. I had my surgery on April 15, had my catheter out 8 days later and had virtually no incontinence. I wore a pad for 2 days and since then I've had 1-2 drops here and there but nothing more than that. One thing I did before surgery is to go for a biofeedback session to make sure I was doing my Kegels correctly (I wasn't) and then I did them faithfully for the 8 weeks before surgery.

As for ED, I'm on 50 mg/day of viagra and began having erections immediately. I'm very aware of how fortunate I've been and that everyone is different.

Good luck with you decision.

Regards, David
http://www.yananow.net/Mentors/DavidW2.htm

Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

i had robotic sur 11 mo, ago this week at mount sinai in new york i still leak and have ed. when i first had my cat. removed i was wearing 10 or more pads a day.never leaked at nigth tough i had a couple of accidents, i did all my kegals take impromine and sudifed. yes i am improved over this time period espes, in the morning i am an active person who is 55 years old workout 5 days aweek pretty good shape, the problems lie in the suport sytem for men, i wish i knew before my oper. what i know now, my psa is zero so thats the good news and happy to be alive, but have many second thoughts mabe i should have gone a different root. but you find out you have cancer and have about two weeks to decide what to do mean while your brain is frying in your head. since my oper i have talked to many men who have had the seed, radiation, and reg. nerve sparing sur, and have feared much better than i have, as of july i will decide if i will have a sling put in me for the leakage, and a pump device for the ed. as for the doctor in new york he does not take my insurance any longer, and i did not receive to much support from his office, i returned to my local ur.

Re: Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Pete,

I'm sorry to hear about the problems you've had. It's really important for people to understand that the average side effects are only part of the story. If you're one of the people who has long-term issues then the averages are meaningless.

I asked my doctor if he understands why some people have more severe incontinence problems and he said there is some correlation with age and fitness but that he's reviewed the videos and records from his past surgeries and tried to correlate them with the outcomes but he still doesn't understand the variations in outcome.

Also, for most people it's ok to slow down and take some time to make the right decision. There are many studies that show waiting 3, 6 or 9 months after diagnosis has no negative impact on outcomes. Of course there are some cases where it's important to move quickly but I think it's more important to make the right decision and to be comfortable with it.

Good luck with your continued recovery.

Regards, David

Re: Re: Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Sorry for the late and perhaps no longer valid response. I have had your same experience. I would never have taken the seeds or radiation over surgery but my prostate was riddled with cancer and I wanted the little factory out of there. I recently was advised by a gorgeous lady Urologist, so she must be telling the truth, right, never second guess you decision. The numbers don't support it, the recover rate doesn't support it and all you'll do is drive your self crazy with needless regret. I also recently learned, in contradiction to the above, that robotic would have been the best possible choice. You did the right thing.

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Replying to:

i had robotic sur 11 mo, ago this week at mount sinai in new york i still leak and have ed. when i first had my cat. removed i was wearing 10 or more pads a day.never leaked at nigth tough i had a couple of accidents, i did all my kegals take impromine and sudifed. yes i am improved over this time period espes, in the morning i am an active person who is 55 years old workout 5 days aweek pretty good shape, the problems lie in the suport sytem for men, i wish i knew before my oper. what i know now, my psa is zero so thats the good news and happy to be alive, but have many second thoughts mabe i should have gone a different root. but you find out you have cancer and have about two weeks to decide what to do mean while your brain is frying in your head. since my oper i have talked to many men who have had the seed, radiation, and reg. nerve sparing sur, and have feared much better than i have, as of july i will decide if i will have a sling put in me for the leakage, and a pump device for the ed. as for the doctor in new york he does not take my insurance any longer, and i did not receive to much support from his office, i returned to my local ur.

Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

I have not read all of these postings, but the ones I've scanned appear to reflect a similar experience. I long ago told the docs I think their stats re: sexual potency post nerve sparing procedure were inflated, and not very realistic. I see since then, that studies reflect my suspicions. I believe no one goes through this, or any other modality of treatment for PCa and comes out the other side the same. I guess for me, I suspected this going in, and held the penile prosthesis as my ace in the hole for future and thankful at least that is there in my life, in contrast with just 20 years ago. I am scheduled for Jun 10, and more than ready. I've been a faithful user of VED for rehab purposes. and feel it has been effective in maintaining size (flaccid stretch), but at this point, after 2 1/2 years slightly shorter, but hard would be 100% improvement, especially considering the hastle getting hard is now.

Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Gary mentions that he is scheduled for an implant and by chance this subject has recently come up on another discussion list. Anyone interested in this – and other issues concerning erectile dysfunction might find it useful to join It might be useful for you to join the Prostate Cancer and Intimacy List where, I am told there are some well informed people on the subject.

Another potentially useful site is the one set up by the late (and great) Robert Young who passed on some years ago now. His widow has kept his site going at there are some good links to intimacy issues at Sexuality and Intimacy Some of the links on the pages may not work, but there are probably enough to provide good information..

Re: Facts (Numbers) about post robotic prostatectomy Re continence & potency

Hi Jim,
I understand your concerns. I am 13 months post robo surgery. With regard to continence, immediately when my catheter was removed I didn't wet myself so the prognosis was that I was continent. After 8 weeks I did not wear a pad; I used pads longer than necessary but I felt safer with one. I only used thin pads to begin with and they were not really a hassle. I returned to a desk job about 7 days after the surgery. I did my Kegels and practiced stopping/starting. I consider myself fully continent. Changes that occurred are, now when I have a full bladder I have a greater sense of urgency (can't hold it as long as I used to) and if I sneeze or pass gas I may sprinkle a few drops if I have a full bladder. I read that on average men don't have the same incontinence problems as most women because women only have one set of muscles to control their bladder. After you have your prostate removed you have one less control mechanism.

Pre-Op I had no ED issues at 48 years old. Post-op I have had ED issues. I did not realize how long it would take to recover (recovery is ongoing.) My post-op urologist measures ED in 3 basic stages, nothing (or using a pump and constriction ring), stuffer, and a sticker. I went through all stages. My doc suggested Viagra everyday for at least one week a month plus as needed. Viagra, and regular use of a pump helped. If you don't use it you will lose it. For the first month or so, I could not get an erection at all. Around 2 to 3 months I had more feeling but couldn't get a stuffer. After 3 months I started using a pump and this made a difference. I used a pump regularly for months, not just for sex but to trick my penis into thinking it was erect. It worked. I am still on the Viagra regimen and it helps. After 13 months, without meds, I can usually get a stuffer and occassionally a sticker; on the meds its a sticker everytime. I continue to see improvement in this area. It is nice to wake up and feel like the man I used to be. I highly recommend getting on a Viagra regimen if you can tolerate it. Start sooner rather than later. Also drugs from Canada are much cheaper.

My post op urologist, who does not do robotic surgery and is old school open surgery, told me that he often sees post op robotic surgery patients with ED. He says that the nerves don't like being cauterized and the trauma to them takes a lot longer to heal (if it ever does) compared to knife surgery. My robo surgery doc never told me this. I believe it also depends on what the doc finds when he does the surgery. I always think of the disclaimer, "Your mileage may vary."

All in all I think I made the right choice having the robotic surgery. It is scary no matter what you do. Dr. Vip Patel, in Orlando (Celebration City) Florida did my surgery. The facility was very good there. I traveled their for the surgery and would have liked to have a doc closer to me (St. Louis). But he is supposed to be one of the best.

Good luck and I wish you the best. You may write to me directly at visitor_59@yahoo.com if you have any questions.
Will

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