This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
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.
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Sorry for the late and perhaps no longer valid response.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.
--- --- --- --- --- --- --- --- ---
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
