I have learned a lot from all the folks who have posted on YANA, I hope I'm able to help someone as much as all of you have helped me.
At this point I have been diagnosed with PC and have been scheduled for Da Vinci laparoscopic surgery on Apr 2, 2007. My first urologist recommended non-nerve sparing radical prostatectomy, fortunately my wife, sons, and sister kicked me in the head and made me look at other options.
We live in Austin and luckily Dr Randy Fagin practices here. We had our first visit with him this past week and were very impressed. Several YANA members have had their surgeries performed by him and have given nothing but glowing reviews. I've already had bone and CAT scans and they came back negative, so we are now just waiting for the biopsy punctures to heal and Apr 2 to get here.
I will post more after the surgery.
This is a short update. There was a little insurance glitch that changed the date of surgery from Apr 2 to Apr 5. Fagin wanted to do the surgery in a hospital that was not covered by my EPO. Luckily there are two facilities in town with the daVinci and the other one is covered. The second thing is that I started PT to help minimize the incontinence issues post op. I'm sure everyone is aware of this but if you aren't, bug your doctor to get you involved in a program. Both Fagin and the therapist have assured me that it will make a significant difference.
I'm now 3 days post-op and it is time to make an update. Before I do that I want to thank Ed H for his help and support. He contacted me by e-mail shortly after I made my initial post and has been a wonderful source of information and encouragement. The surgery went fine and Dr Fagin said there were no "visible" signs of cancer outside the prostate. The final word on that will be this Friday when I go to get the catheter removed and the pathology report.
As far as recovery I don't think it could be any better. I walked 40 minutes Thursday night (day of surgery) and have walked at least that long every day since. I had gas pains Thursday/Friday/Saturday but they are mostly gone today. The feeling of doing too many sit-ups is gone and I only have some minor soreness where the incisions were made. I actually worked for about 4 hours from home on Saturday, a piece of software I'm responsible for needed some tweaking and we were able to get it done by phone and e-mail.
I'm still tired, I didn't sleep much the night before, night of, or night after so my butt is dragging but that is getting better. I just feel like I worked too much - not like I'm sick. The catheter is interesting - it doesnt hurt but it is an annoyance. My wife and I have worked out a system for holding the leg bag in place using Velcro strips and small Ace bandages that keeps it pretty steady while I'm walking. All in all, it could be a lot worse.
Thanks to all the guys here with their tips, we have a hook in the shower and I'm wearing one of the recommended pads. I think anyone who is in the Austin area who needs this surgery should consider Randy Fagin. He is a good guy and I can only think that my progress to this point is due to his skill and the pre-op PT regimen that he had me on. I also am lucky to have a retired nurse for a wife who has been very kind and supportive throughout all this.
More after Friday.
Friday could not have gone any better. The path report indicated lymph nodes were clear, seminal vesicles were clear, and there were negative margins on the prostate. Additionally, the path report gave a final Gleason score of 6 as opposed to the 8 from the biopsy report.
So at this point I'm as close to being cured as you can be with this stuff. Now some realities - I'm dripping steadily and have limited control over my bladder. I go for the first post-op PT appointment tomorrow and hope things will start to improve. Dr Fagin gave me a bunch of Viagra samples, a Viagra prescription, and an ErectAid pump which I'm to start using in two weeks. We'll see how that goes - ending the waterfall is my first priority.
After talking with Ed H (thanks Ed) on the phone today I realize that the following issues are common to all of us at this point: getting up multiple times each night to try and pee, not getting enough sleep, becoming anxious about this incontinence thing , and trying to do too much too soon. I'm going to hold off on going back to work for a few more days and just try to rest and take care of myself.
Don't take anything above as complaining, I feel pretty good (I played soccer until I was 50 and near the end felt worse after some of those games than this) and based on everything I've read here the incontinence issues will be resolved. Given where I thought I was 6 weeks ago things could not be better.
Now if the Sabres will just win the Stanley Cup.
It is now 2.5 weeks post-op and I'm essentially back in basic training. I have a half hour of rehab exercises in the morning and a half hour in the evening plus I'm walking at least an hour several times a week. My physical therapist has her doctorate and is excellent. She has put together a set of exercises designed to specifically work the pelvic floor muscles by themselves and in conjunction with several other sets of muscles.
Incontinence is getting a little bit better each day and the rigorous PT makes you feel like you have some control over how all this is going to turn out. Anyone who lives in the Austin, TX area and has prostate surgery should definitely contact Sullivan Physical Therapy.
I'm still waking up throughout the night but that has as much to do with my normal insomnia issues as it does with incontinence. I didn't realize how annoying wearing pads would be, especially at night. I've finally remembered the tip I saw on YANA somewhere and am using a pillow to support my "up" leg when I lay on my side and it is helping a lot.
Time to post again - the good, the bad, and the ugly.
The good - had my first post-op PSA test and it came back 0.05. Basically, it is gone. The Sloan-Kettering web site has an automated nomograph that allows you to calculate your survival probabilities based on your post-op results; given capsule containment and negative margins the probability of going 7 years without a recurrence is .98 % Ill take those odds combined with PSA = .05.
The bad - still a little slow on the erection front, some life but it is going to take time.
The ugly - still have significant incontinence. I'm dry at night but using several pads during the day. I've been doing my exercises religiously (even getting up at 4 am while on business travel) and have gotten a lot stronger. My PT says that regaining control is a step function and I believe that, one night I was peeing and the next night I was dry and have stayed dry since. Sitting is getting some better but a couple of glasses of water will make things rain. I'm still pretty optimistic and won't get worried until a couple more months have gone by.
All in all, I can't complain. I again want to thank all the guys on this site who have shared their stories; I continue to read the site often and take strength and comfort from all of you. I also want to thank Ed H again for his support, Ed you made a big difference.
It is a little over four months post-op and time for an update.
This is basically for the guys like me who are a little slower in the continence department, take heart, it gets better. In my case, recovery is a step function and you can go along for several weeks with only minimum change and then in a couple of days drop 2 pads. I?m down to a relatively dry 3 pads a day at this point - two weeks ago I was at a still quite wet 5. While I feel like the slow kid in the pee class both the Dr and PT say I'm well within normal bounds so again, don't get down, you will get better.
A little change on the ED front but I?m not going to worry until I get the peeing under control On all other fronts I feel totally recovered. I'm running about 3 miles four times a week - goal is 4miles by Thanksgiving and have, so far, kept the weight off I lost during/after surgery.
Two of my long term friends were just diagnosed with PCa and are going to have Fagin operate on them, and to think that 6 months ago PCa was just a hazy concept in my mind.
To all the guys who read this I offer my support, encouragement, and best wishes just like they were offered to me when I first came here.
Time to post again.
Had my eighth month checkup and PSA was essentially at zero. Still dealing with incontinence issues. Shortly after the August post I slipped on some stairs at home and landed on my lower back and head. It was early and I wasn't paying attention so I didn't even get a hand down. I've rarely felt such pain - and I've blown my knee out twice and been in several casts over the years - my butt felt like it was on fire for several days and I couldn't do my Kegels for 3 days or run for a week.
The bad result is that it wiped out all continence progress up to that point; I was dry at night but little else. Went to diapers and couldn't use pads for several weeks. The physical therapist can measure the contraction current in your pelvic floor muscles and that is directly proportional to their strength. I lost about 25% of my sitting strength and over 50% of my standing. So I have been slowly regaining strength and getting a little drier over the past 3 months. My back still hurts and I'm not where I was in August but things are getting better. I put all this gory detail down for the next guy it happens to - trauma to your lower body can set you back.
I'm glad that Fagin hooked me up with Kimberlee Sullivan (see above) - she is a life saver and really fills the needs for action and information when something like this happens. So, all of you guys who were dry in two months drink a beer for me - I'll get there but it will take a while longer. For me, the key is to not take it personally. Life is a succession of dice rolls, sometimes you get 7's and sometimes you get snake eyes.
I've got an appointment next week for PSA, etc and I will update then. I'm sorry it has been so long, this was a busy year and I lost track of things.
I've been contacted through YANA by several guys and have helped them with their surgeries by Randy Fagin - I think those men helped me more than I did them.
I will be in touch after my visit next week.
[Glenn kept his promise to update in January, but that went astray and he has just forwarded it to me:]
First, let me start off by apologizing for not posting for a while. This has been a weird and busy year and while I knew I had to get my butt in gear it just didn't happen, thanks for the gentle kick Terry.
As usual with this stuff, there is good news and bad news. The good news is that I had my semi-annual checkup today and PSA was essentially zero. I'm going on two years post-op (that is amazing, it seems like just yesterday I stumbled on this forum) and am finally allowing myself to believe that I'm cured.
The not so good news is that I still need pads. Examination by Dr Bryan Kansas, Fagin's partner who deals with this side of the issue, shows that the urethra is so scarred that it won't close properly. When sitting or laying down, things are fine. When standing there is dripping and upon compression of the bladder (e.g. lifting something heavy or stretching in some weird way) there can be a squirt.
I suspect there are two things at work here, one, I'm probably prone to this type of scarring and, two, I was too active when the catheter was in. My pouch always was red but there were no clots so I thought everything was OK. My wife is a nurse and no bells went off in her head either. Neither Kansas nor Fagin will explicitly sign on to this theory but they won't explicitly deny it either.
The other part of this is that the math works out too – as near as I can tell, about 85% to 90% of the people who have DaVinci surgery are continent afterwards. There were five of us where I work who had the surgery, by Fagin, within a 9 month span - given the numbers above that means that there is anywhere from (.85)^5 = .44 probability to a (.9)^5 = .59 probability that at least one of the five people will have continence issues. The other 4 are dry, I happened to come up on the bad side of the numbers.
That said, I'm not really hampered in any significant way. It is annoying and I have to make sure I carry pads with me, know where bathrooms are when out in public, and manage my liquid intake depending on what I'm going to do and where I will be. But, I still run 12-15 miles/week, I still work in my shop as much as I want, I still travel for work to somewhat remote places with no serious issues, and I pretty much do what I want when I want. I have a little craft business on the side and this year I did a 12, 12 hr/day show at Xmas and had a lot of fun – could have used more customers but that was not related to the unwanted water problem. I will probably have an artificial sphincter installed in a couple of months but I'm not rushing into it. In short, I would still have the DaVinci surgery, knowing that I'm cancer free is very important to me and I couldn't have waited the two years it takes to know whether or not radiation has been effective.
My advice to people who have contacted me is to have the DaVinci surgery but restrict your activity while the catheter is in – if you are bleeding, back off and watch TV.
Good luck to everyone and Terry I promise to be more prompt, my next appointment is in July.
First, the good news. Just had my 3 yr PSA check yesterday and it was undetectable. Basically, at this point it is very likely that the surgery succeeded and I won't have to deal with this crap again. Now, the other news.
I never did regain full continence after the surgery and had the "other" problem also. I did PT for almost 3 years and managed to get to a point where I could deal with the incontinence most of the time. It involved knowing what would precipitate an incident, having plenty of pads around, having a relatively structured life (same crap most days), controlling fluid intake, and never missing a chance to pee and do maintenance. But I was always on edge when things changed - which they do. I go to remote test sites with minimal privacy/bathrooms and I have a part time business that requires a lot of lifting and standing in public places.
So on March 3 I went in and had an AMS 800 and AMS 700 implanted. OK, for those contemplating the same surgeries here is a brief summary of the recovery period:
The first three days are pretty miserable. Your perineum is throbbing, the implant (AUS 700) is inflated and hurts like hell, and your balls are black and blue. Your main thought is "I am an idiot for doing this, wet pants and a limp dick weren't THAT bad"
I was taking mega does of Advil and about day 4 they started to kick in and pain began to subside, balls started to look normal and you start to think that maybe you will survive this stuff. Your dick is so swollen that it looks like your scrotum's little brother.
After one week you return to work, you can't sit properly and, since that is your job, the days are pretty long. It isn't really a lot of fun to get up and make presentations with an inflated dick hidden behind a big Depends that is half wet but you rationalize that it really makes you look like a man and you look current in big, baggy pants. Your dick now whines instead of throbs and you consider that progress.
After two weeks you can work in your shop and you realize that standing is much more comfortable that sitting. Your pubic hair is growing in and scratches and itches and you begin to understand the trials and tribulations of male porno stars. It is clearly not all fun. Your dick has quit whining on the inside and now starts to complain about rubbing on a wet pad and scratchy public hair. You tell him to shut up, the worst is over, and paradise is only a month away.
Finally, the day before deflation is here and you realize that the wish for a constant boner you had at 15 has been granted. You also realize that it is true, be careful what you wish for. You tell your dick that tomorrow is the day of mercy, dry and deflated is just around the corner. You're happy that you made it, your wife is happy that the bitching will stop, and all the young guys at work notice your mood change but don't know why because you didn't tell them all the details.
The big day is here, deflation and activation. Dry boner heaven, you can't believe it. But wait, there seems to be a problem. The AUS 800 doesn't seem to be working. The doc says there appears to be something wrong, the pump doesn't seem to have any liquid in it. A day later you know it for sure, you're leaking as much as ever and you can pee without the messing with the control box. Rats, damn it, will the insurance company pay for a redo? The answer is yes, your insurance will pay for a redo.
So, three months later I went in for a redo. The worst part is that you need the old perineum sliced up again. Repeat the above, not quite as bad since the AUS 700 just got moved around and not reinserted. After a couple of weeks I started messing around with things, being an experienced scrotum squeezer by this point and I'm thinking, damn this pump is in a different place and I can't really get at it too well. But, the doc will fix it so I don't worry. The big day gets here, I'm going to quit peeing my pants, its been 5 months of wet, raw, unpleasantness but, hey, guys will do anything for their dicks, right? Well, it turns out that I can't stand having my balls squeezed in order to activate the pump (part of the legacy of the world's grossest vasectomy done in Sondrestrom, Greenland 38 years ago, I mean who cares about some E-4's nuts?). It is nestled right there in my right ball, kind of like a hammer on a partially full water balloon. [Another Member - Dino Brown - also had problems with his AMS 800 which finally came right]
So, we decide to open it back up and rearrange things. That was done about three weeks ago but no perineal stuff and I actually was able to work in the shop the afternoon of the operation. It got turned on last Friday and voila, I'm an adult again. I get a drop now and then but basically I'm dry. I'm still learning how to manipulate it and I think that there was some change in the way my bladder works but I can walk around with no pads, just some folded up toilet paper. Now the AUS 700 is a different story, I'm not used to that thing and it still hurts. I want to run and walk and at this point I can't do that. I'm going to give it till the end of the year and if it doesn't get better I'm getting it yanked out.
OK, that is enough from Mr. Happy. As we've all learned, very few of us get through this with no issues, some more than others. But, to be totally honest, I prefer this to metastasized PCa. And, I can't help it, the situation is so absurd sometimes I just have to laugh. I mean, pump your dick up? Anyway, thanks to Terry for this site and thanks to him and George for kicking me in the butt to post. Good luck to everyone.
I cannot believe it has been almost 18 months since the last update - thanks once more for the kick Terry, make it harder next time if you need to kick again. [Hint for Glenn - try the diary system in your software:-)]
As usual, good news first - PSA is still undetectable. Now the bad news, there really isn't any. The artificial sphincter is working pretty well. I go through 1 Tena pad every one or two days but they aren't too wet - less than one oz/day. That is with lots of running, lifting, and manual labor. I also do Kegels pretty regularly just to make sure. The implant also works as advertised. It can be a little uncomfortable at times but you get used to it and it doesn't get in the way of anything.
There was a good article in the Feb 2012 Scientific American about prostate testing and resulting issues. I was struck by the author's reference to a patient who selected watchful waiting waiting 16 years ago against the advice of every doctor he spoke to. The patient is identified as Mr. H and all I could think of as I read the article is that he had to be referring to Terry. [I may be notorious in some parts of the prostate cancer world, but I'm not famous!] It turns out Mr H. is doing quite well and has had to deal with no treatment side effects. If this debate would have been going on during my diagnosis and treatment period I might have done some things differently - I'm not sure. I'm also not complaining, things could be much worse.
However, as this journey continues I have more and more admiration for Terry and the work he does and the aid that he has given all of us. I also have great respect for his decision when faced with this to pursue watchful waiting and to work his way through it. I'm very glad I found this site many years ago and proud to know Mr H.
Another year has flown by, why does time fly faster as you move further into geezerdom? Things have remained pretty much constant since my last post. PSA is zero, both devices are functioning properly, and my life is pretty much normal. I was laid off in 2011 and turned the part-time woodworking business into a full-time job, 2012 was the first complete year of working at it. Plenty of lifting, bending, moving, hauling, etc and essentially everything was fine. I use one Tena pad every day or two, but they rarely get full and it is nothing like before the surgery. I run 3 miles four times a week and have no problems - no rubbing, soreness, or discomfort. Given the side effects that resulted from the original surgery I think things have turned out as well as can be expected. Good luck to everyone and, once again, thanks to Terry for this site.
Another year - yup, I say that every year, but this year I mean it. Basically, nothing new to report. I've gone back to day jobbing for a while, doing research in a lab at the University of Texas. Still doing woodworking on the side, just not as much. Still running and exercising on a regular basis with no ill effects. I will be 68 in August and feel very fortunate to be in the place that I'm in. If you would have told me 5 or 6 years ago that I would rarely think about PCa and what happened I would not have believed you. There were 4 of us where I worked diagnosed at the same time and we all elected DaVinci with Fagan. All of us are doing fine, are active, and basically have moved on. So, for the newbies, take heart - it eventually fades and you get to have your life back. Good luck to everyone and thanks again to Terry for this site - you will never realize all the good you've done with it.
All right, I'm not going to say another year has flown by – even though it has. Like the past few years, I have nothing much to report. PCA is 0, still running 12+ miles per week, still working at UT, and still doing woodworking on the side. The artificial sphincter continues to work well, one Tena pad per day. The AMS 700 continues to work well, although I don't think I'll every get used to "pumping it up" it beats the alternative. For newbies who have wandered onto my story I would like to recommend a book by a good friend of mine, http://www.amazon.com/PROSTATE-CANCER-Asking-Right-Questions-ebook/dp/B00E0LIS18. He was diagnosed a short time after I was, had Da Vinci surgery done by Fagin, and ended up with no side effects at all. I think his book has a very unique and practical discussion of the issues around Pca and would be a useful read for anyone just starting their trip down this unusual path.
I'm sorry to hear of Terry's passing, although I never met him I'm eternally grateful to him for setting up this site. A great big thank you to Mark and all the others who are keeping it going. You guys define what it means to be kind, selfless, and generous.
OK, I'm going to be 70 in a few weeks and, to be honest, I rarely think about PCa. The artificial sphincter still works fine, actually went to a smaller Tena pad, and I'm still not used to pumping up the 700 but it still works fine also. Able to run/walk 25 - 30 miles a week and am back to wood working full time. In other words, PCa has been flipped the bird. My guess is that with some of the newer treatments the post-op results will be even better than mine so, for guys at square one on the PCa walk, take a deep breath and be assured that things will get better.
Good luck to everyone and thanks again for the YANA site, you guys have probably helped more people than you can ever imagine.
Glenn's e-mail address is: email@example.com