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Posted 1/3/2016 7:38 PM (GMT 0)
One of our newer members posed a question on a posting this morning about finding the major long-running threads about whether there is a common thread for discussion of surgical side effects particularly ED. I didn't know of one, so I thought I'd start one.

I would suggest, however, that this thread shouldn't be a place for the debate about the relative side effect profiles between surgery and radiation therapies.

If I've gathered anything in my time here, and in my own experience as a surgery patient, it's that the side effects of surgery truly run all the way across the board. I would suspect there is a true bell curve distribution of ED levels in post-surgery patients, however there is not a lot of good published data about it. A google search I did recently was a meta-analysis of prostate cancer surgery patients for 5 years ending I think in 2010. This study did not differentiate between Robotic and open surgeries, and did not split out any differences based on age, health, pre-surgery ED, or anything else.

That being said, I count myself as one of the fortunate ones. I had no significant issues before surgery with ED, but I did have some BPH type issues (weak stream, getting up 2-3 times a night, urine retention). I got continent (no pads) about 6 weeks post surgery, and I had no lasting ED, with things starting to happen a few days after catheter removal. Six months after surgery I started on 5 mg cialis daily, and it has taken care of the last bits of incontinence and made for better erections than before.

I know there are some guys in here who aren't so fortunate, and I know some who are. Let's hear from all of you.
Posted 1/3/2016 8:39 PM (GMT 0)
Very similar to Halbert. I was pretty much continent, enough not to have to wear anything, 5-6 weeks after surgery, and 100% at 6 months post op.

On the ED side, things started to happen a few days after cath removal, and I took Cialis 5 mg daily, did the deed at 8 weeks. I'm now 1 year post op, this week, and stopped taking Cialis about a month ago, no problems, full function in that department as well.

I'm thankful.
Posted 1/3/2016 10:02 PM (GMT 0)
I don't have any personal experience to share, since my RALP surgery was only 11 days ago. But I can pass along what my doctor told me prior to surgery. He is head of the Prostate Cancer Program at a major university, and has done over 1,000 robotic surgeries.

Continence: He said robotic patients dry up sooner than those who have open surgery. In his experience with robotic surgeries:
--50% of patients are dry right away; 50% experience leaking for a few weeks.
--At 3 months, less than 2% have leakage requiring intervention. 3-4% have leakage when laughing, coughing, sneezing.

He is a big believer that kegel exercises help. He said doing kegels (two sets a day of 8-10 exercises per set) before surgery usually leads to dryness in a few days.

Erections: Robotic and open results are about the same. He said that even with a nerve-sparing procedure, the nerves are bruised during surgery because they have to be resected away from the prostate. For that reason, men often find they have to wait 3 months or a year for the nerves to regenerate.
-- At age 50, 70% of men recover their erections after 1 year.
-- At age 60, 60% recover erections after 1 year.

Caveat: These results depend on several factors, which are outlined in a 2011 report published in JAMA, entitled: "Prediction of Erectile Function Following Treatment for Prostate Cancer"
http://jama.jamanetwork.com/article.aspx?articleid=1104401
If the link doesn't work, you can search for the title in Google Scholar.
The study, which involved over 1,000 men, says that "younger age, lower PSA level, better pretreatment sexual functioning score, and nerve-sparing surgery are associated with increased odds of functional erections."

See figure 1 for three graphics showing results for 50, 60, and 70-year-old men, two years after surgery. The data are shown in table 2.
Posted 1/3/2016 10:22 PM (GMT 0)
Nova:

I think there was a little self-interest in your doctor's remarks regarding ED.

I had no ED before the surgery. Afterwards, it's not good. Now, that's just me, but from what I've read I am more typical than you would expect.

Regarding SE, the surgery totally cured a miserable situation with BPH. I was having great difficulties with urination. I got VERY close to heading to the ER a few times. No problems now.

I had minimal issues with incontinence and it all cleared up within a few weeks.

Unfortunately, it did not cure my PC, but that's a different issue, I guess

Mel
Posted 1/3/2016 11:46 PM (GMT 0)
39 days post surgery
12 days post cath

I'm pretty darn happy (suprised?) with my continence. If it never got better than now I could live with it. I wear underpants when I sleep...though I don't know why. I think it's just a lack of confidence thing.

Same with the pad during the day. I'll have a squirt or 2 most days so I'm uncomfortable not wearing a thing at all. There's no rhyme or reason except that standing up can be a danger zone. And, oddly enough, they also seem to happen mainly when my bladder is actually empty. And I'm still learning what gas to pass and what gas not to pass lol.

We'll see how the ED thing goes. I'm single with no girlfriend. I've used my imagination a time or two. If I had a lol woman I think I'd be good to go sometime in the foreseeable (immediate?) futures. :-)
Posted 1/4/2016 3:48 AM (GMT 0)
I went to the Chairman of a Uro dept 4 hours away, used a guy who had about 3000 RRPs behind him and an equal number of open RPs. He told me I would have ED that would be unresponsive to pills, since he would have to cut wide in my case, but no problem I could just inject. Plus, I needed Cialis before hand, and that was against me. But the Cialis almost made me feel like an 18 year old, great erections and really great orgasms on most attempts.

At 23 months, I am still dead as a door nail as far as anything natural goes. Or anything with pills, as predicted. I never had much success with injections, always just shy of good enough. If a 6 out of 10 is the minimum for usable, I had a 5. Increasing dose never seemed to make much difference. I did barely manage to get the deed done a few times, but really not good enough. Plus there was always a good bit of unpleasant ache that would last for an hour or two after injections. Pus, even that just barely adequate to poor response was only while standing straight up. Any laying down quickly went to zero, though it would return to the barely adequate(on the really good days) response.

Now with a pump(by itself or combined with injections) could have used it as a club, standing up or laying down! Probably harder than any natural erection I ever had. But that just felt all around kind of terrible, very unpleasant both physically and mentally. Plus I soon realized that pump or injections, the orgasms did not feel worth a dang, sometime actually being downright unpleasant. Truly, not one worth having for 2 years. So, I pretty much stopped tormenting myself with all of that bizarre stuff, it just is not worth the effort. Oh yeah, I almost forgot climacturia. But at least I have not yet had significant shortening, or an ER visit for an erection that won't go away, or Peyronie's. Some folks here have had all of those things.

I could get an implant and originally figured that I would, but with the loss of pleasurable sensation, what's the point. So I just count it as a loss and go on down the road. Pleasurable sex was from youth until 1 day before surgery, the rest is now. So be it.
Posted 1/4/2016 3:50 AM (GMT 0)
Is this also about incontinence? I was miserably incontinent for maybe 6 months, less miserable but still with a very bothersome amount of incontinence for most of the 1st year. I could hold it fine or stop mid-stream from the get go by Kegeling, but you can only Kegel for so long.

But, on the bright side, wet only when standing up. I was dry at night and when sitting from the moment the catheter came out, but when I would stand it would pour out. Kind of the opposite of sex, I was better off when down. I did tons of Kegels and had the bio-feedback/electro-stimulation training at about 3 months or so. At about 1 year I finally got to where I was mostly dry all day, and even started occasionally going without pads, and usually getting away with it. Now I only wear the small shields once or rarely twice a week an even then only for when it would be extra embarrassing to have some wet spots showing. But I have not had- on pad free days- a wet spot big enough to show except one time about 6 months ago. Still, it is something I have to think about and be alert for every day, or else it would be easy to have a pretty good accident. I always have to be ready for a quick, strong Kegel to shut things off. That is 100 times better than at 3-6 months, and something I can live with. But I still would not call it fully continent.
Posted 1/4/2016 1:44 PM (GMT 0)
my husband's surgical SEs
4 months to recover from the surgery itself.
Mostly continent by 6 months. At a 14 months occasional drips but no pads.
Takes 5 mg cialis daily for blood flow. He had non nerve sparing surgery. He wouldn't try the pump for sex, but does do rehab with it. Injections worked extremely well from my POV, but he hated them and refused to continue.
At 7 months developed a leg infection from lymphedema, terrible pain, and couldn't walk (or pump) for almost 2 months.
9 months began to get some soft natural erections.
9 months developed peyronies.
By 14 months strong erections with just the daily 5 mg cialis, but extreme atrophy, and peyronies.

I would encourage any NNSRP guys to stick with rehab aggressively just in case. Apparently a small percentage (I've heard 5% - 15%) of NNS guys do regain natural erections.

My DH didn't want to do any rehab because he didn't want to do it for life, and he would never have surgery. We had a lot of arguments about it, and his pumping was half hearted. But he did regain sexual function. However, with the amount of atrophy he has, and the bend and hourglass from peyronies, sex is nothing like before surgery.

He still limps a little from the infection
Posted 1/4/2016 1:46 PM (GMT 0)
Good thread idea Halbert. My response will be somewhat brief due to limited time this morning, but this is a discussion that needs to happen periodically.

In the months after and up to a year after my RALP, I posted a few times that statistics represent populations but cases are individual. This came from my experience of being in the middle of the pack on time to continence and on the longer side of ED recovery. My signature should give a sense of timing in my case.

On continence, the unexpected aspect was developing a case of feeling like I had a small bladder. I had to retrain myself to hold longer and longer. Any meeting at work that lasted longer than an hour or so resulted in an extra bio-break. This resolved over time but took two to three times as long as simply not leaking.

On ED I started with a very good pre-surgery baseline. Pills had little to no effect despite trying them all multiple times over most of a year. I used a pump for rehab during this time but sex was very un-natural and only mildly pleasurable. A couple attempts with Muse returned minimal results and a fair amount of ache. My urologist was unwilling to try injections until a year of non response of pills. I got immediate response from standard trimix. I used trimix for several months and and was able to titrate the dosage down. Pills started working effectively after months on injections. Eventually I was able to achieve achieve natural response, though I sometimes need a small dose of Levitra to get pre-surgery erections.

Another consideration was general fitness. Leading up to surgery I walked a mile or more daily and went hiking several times a year. I set a goal of going backpacking in the Rockies for one year after surgery. It took a few months to get back to acceptable fitness like pre-surgery. I met the one year backpacking goal with a short pack trip and camping, then went on a 10 day back country trek at 2 years after surgery.

Explorer

Edit: I had trimmed my signature details to limit length. Time to no pads was about 5 weeks. Urge issues were manageable by 3 to 4 months. ED was a year of non-response, several months of injections, several more on pills, until natural response was at least enough on its own. Full ED recovery was close to 2 years.
Posted 1/4/2016 3:13 PM (GMT 0)
My post surgery results are very similar to Billy Bobs...almost to the point that I am about ready to give up on sex, one more trip to urology to try something else besides pills, see how that goes. Inconntenace great now thanks to AUS, those who dont have ED or Inconntenace issues are very lucky.
Posted 1/4/2016 3:53 PM (GMT 0)
As the incontinence goes that was never a big problem for me, although after 3 years I still have drips and dribbles at times and wear a light shield daily for those occasions. Just another reminder of what has become of my past (pre-op) life.
The issue of ED is ongoing and doesn't look like it will ever get better. I have had almost "0" recovery in that department. I did have some issues with that before the surgery, but nothing like what it is now. The injections work fine for me and are my regular routine now twice weekly. I've not experienced any side effects from doing the injections and hope that remains the case. I will say that my main problem with it all is that sex just isn't as satisfying as it was before and I have times where I wonder if it is worth the effort. So it's a new year and on I go, thankful that cancer is gone from my body, but a changed person indeed.
Posted 1/4/2016 4:04 PM (GMT 0)

Explorer59 said...
Another consideration was general fitness. Leading up to surgery I walked a mile or more daily and went hiking several times a year. I set a goal of going backpacking in the Rockies for one year after surgery. It took a few months to get back to acceptable fitness like pre-surgery. I met the one year backpacking goal with a short pack trip and camping, then went on a 10 day back country trek at 2 years after surgery.

Explorer

Yes. Great info.

At the risk of telling the OP what his thread is about...general fitness times lines don't the air time they deserve. (And i consider this information very much a major side effect of surgery).

Speaking for myself...such information is every bit as important as sex and continence.

Your goals of one year, 2 years, are very useful. Many times I feel I'm "behind the curve" as to my general fitness post surgery. This kind of honest sharing helps. (As does InTheShop's constant reminders). And halbert shared in another thread where, looking back, 3 weeks to back to work may have been too ambitious on his part.

I felt I should have been "playing golf" at 2 weeks.
(Because some can). That's not been my experience at all. (I'll chronicle my journey at some point). It's my belief we all like to tell how well things are going because we do, in fact, feel so much better and we strive to give others hope by sharing the good stuff. "I was surfing again in 3 weeks" is good, positive information. But the "then I went home and crashed from fatigue" can get left out for fear of sounding negative. And no one wants to be thought of as a complainer. I just have to believe that sometimes the honest side of the same coin gets short changed.
Others have shared 4 months to "mostly Pre-op energy and endurance".

Very helpful information to include.

Post Edited (island time) : 1/4/2016 9:31:23 AM (GMT-7)

Posted 1/4/2016 4:38 PM (GMT 0)
halbert, kudos to you for starting what could become a valuable thread for our future newcomers…

Your noble objective here, I believe, is to bring the full gambit of surgical side effect issues to the surface rather than hide them, and THIS is truly what newcomers want to see by coming to a peer-to-peer site like HW/PC. Unfortunately, it has been documented that the side effects of PC treatments (all treatments, although this thread is focused only on surgery) tends to be understated by clinicians communicating to the newly diagnosed.

I hope that some of our HW/PC members who have experienced iatrogenic positive surgical margins will add their comments to this thread. While it is not common, it is something for newly diagnosed to recognize…especially those newly diagnosed with favorable-risk PC.

One would not typically think of a positive surgical margin (PSM) as a “side effect” of surgery (I would typically label it as more of an “outcome”), but an iatrogenic PSM occurs when the surgeon accidently cuts into the prostate during the very delicate procedure and potentially exposes or leaves behind cancerous cells which otherwise would have remained encapsulated, creating an elevated heightened risk (and anxiety) for the patient. While the anxiety is probably ongoing, the risk may or may not materialize for the patient in the years following surgery.

This is an especially egregious outcome when the patient is a clinically at “low-risk” for progression because “probably” (or, I should say, “hopefully”) they had—as a part of their treatment “decision” journey—heavily weighed the widespread recommendations for such cases to follow a path of Active Surveillance (AS). AS leads to a complete absence of any surgical side effects at no additional risk for longevity reduction for men clinically at low-risk.

While an iatrogenic PSM did not happen to me, and as I already said it is not “common,” it is still a part of the PC surgical landscape…and I believe, halbert, you are seeking to reflect the full gambit of issues and not just the common ED plus incontinence issues.
Posted 1/4/2016 6:10 PM (GMT 0)
I can add a SE no-one other here seems to have : painless swelling in the left groin (Lymphedema), a result of the lymph node removal. Had it in both groins but have been reduced at the right side over time.
Otherwise my SE is very tolerable at 16 month post surgery.
Continence: fully dry immediately at catheter removal, never used any pads
Urine flow strength: 50% better than before surgery!
ED: 80% recovery without pills (good result according to uro considering only unilateral nerve sparing)
Fitness: same as before surgery after 3 month
Posted 1/4/2016 6:27 PM (GMT 0)
Thanks Halbert for starting this post. Great info all in one place for someone like me 3 weeks post surgery. A couple of the posts already match what I've been experiencing so it helps to think I may be on a similar path to recovery.
Urinary incontinence: Explorer59 matches my experience with the smaller bladder feeling, esp at night. Initially woke up every hour all night long and had to go because of the full + burning sensation. Drove me crazy, made sleeping miserable. Just started improving 2 or 3 days ago and can go approx 3 hours before getting up. I keep trying to push it further cause it does feel like I am retraining the bladder. Sitting is when I leak the least, walking around the house some I do not leak much, but when I walk further outside it just comes out as it wants. I carry the thick depends pads in freezer storage bags that I switch out as needed. I wear them inside the depends underwear type diaper.
Fatigue: Feel like it will be a process to get back strength and energy but I feel like I finally want to exercise some. I'll ask the Drs. if I can do light exercise at 4 weeks. Feels good to have some positive thoughts.
ED:No interest yet so I wouldn't know. Need the other issues to improve first.
I was on hormones for 6 months prior to surgery so fatigue and ED are still affected by that also.
Posted 1/4/2016 6:53 PM (GMT 0)
I am told that my SE's are very typical. No erectile problems before surgery. In the 8 years since surgery I have never had a natural erection. Erections only possible with bimix injections. Orgasm unsatisfactory still. However I am very sexually active for my age.

Before surgery, no urinary problems. 8 years after surgery I still have minor stress incontinence.

Knowing this would I have avoided surgery?

The answer is yes. I still needed radiation later. My friends who used brachytherapy have had no long term SEs and no recurrence.

I am not a fan of surgery.
Posted 1/5/2016 1:03 AM (GMT 0)
Thanks for the good comments so far. On the general fitness side of things: Having known many people who have had all manner of surgeries and other treatments for all kinds of things, including cancers, and my own history, I knew right up front that no matter what treatment I chose, the time to get to "100%" overall was going to be measured in months, not weeks. And I was right.

I also want to note that the group in here is self-selected, and those who have been treated and came out good on the other side tend to leave and not be heard from again. I wouldn't put a lot of statistical value on the responses and their severity.

On the comment that 'surgeons tend to overstate the positive results', that may or may not be true. I tend to think that there are a LOT of guys out there who have surgery and never look back and never have any major ED or incontinence after the initial healing is past. I simply don't know for sure. But when my surgeon told me that based on my health and history I had an "80-90% chance of making trifecta within 6 months", I had no reason to disbelieve him.

We're told to ask our treating physicians for 'their personal record stats', should we assume they are going to lie to us?
Posted 1/5/2016 3:38 PM (GMT 0)

halbert said...

If I've gathered anything in my time here, and in my own experience as a surgery patient, it's that the side effects of surgery truly run all the way across the board. I would suspect there is a true bell curve distribution of ED levels in post-surgery patients...



Speaking specifically of ED, which you are doing here in this quote halbert, I would agree with there being a wide range of outcomes which "run all the way across the board."

However, if I may comment on your suspicion about the "bell curve" distribution of outcomes, as a "student" of statistics, my observation is that the outcomes form more of a continuous uniform distribution.

A bell curve, or normal distribution, would imply that there is only a tiny, remote chance of having an outstanding result, as well as a tiny, remote chance of having a really poor outcome. My observation is that we see more than tiny, remote occurrences of both...AND along the continuum of results in between those wide endpoints there is just about an equal chance of having any result in between. We see some with great outcomes, some with pretty darn good outcomes, some with ok outcomes, some with not so good outcomes, and some with awful outcomes. (Again, we are talking about ED after surgery.)

It's just about a random draw-of-the-straw on what outcome you will have...and that's what a continuous uniform distribution is.

Let's acknowledge up front that men who already have some initial ED won't get better and they will only stay the same or get worse after RP surgery, which is another way of saying that the younger populations will generally tend to fare a bit better than the older men after RP. Similar truism that going to an experienced surgeon can lead to a better outcome.

However, there are so many instances we see here of guys young and old who went into RP surgery with experienced practitioners with a strong belief (or maybe their surgeon told them they had a good probability) that they would have good erectile function afterwards who have been completely devastated by the level of dysfunction they are experiencing afterwards. Their ED outcome was purely luck, or in their cases bad luck...which is best described mathematically as a continuous uniform distribution.

Moreover, this also reveals just how "lucky" those with good outcomes were...and just how close they came to being one of the unlucky ones.


halbert, this is not intended in any way to de-rail your excellent thread—and I hope to see more men come forward with contributions which more fully describe the range of side effects besides ED after surgery for the benefit of newcomers. My only intent is to enrich the conversation...

Post Edited (NKinney) : 1/5/2016 8:43:55 AM (GMT-7)

Posted 1/5/2016 3:39 PM (GMT 0)
Morning,
I think it's important to be in good physical shape prior to surgery as well as doing the Kegel's.
3-4 weeks after catheter removal full continent.
I had no issues with ED prior to surgery. Was prescribed 5mg of Cialis for 60 days. After 30 days I stopped as natural erections with physical stimulation occurred. Took several years before spontaneous erections occurred. Wife and I lead a very active and satisfying sex life.
I have no regrets regarding surgery.
Posted 1/5/2016 11:07 PM (GMT 0)
Just stress dribbles by about 7 weeks, pad free at 14 weeks. ED responded to PDE5 almost immediately but something useable only lasted 5 minutes for about 6 months. By 9 months all systems are go with 5mg daily Cialis. Recently tried stopping the Cialis and I clearly still need it for both ED and continence 11 months post surgery.

I don't think a doc would ever directly lie about their record (how could they with written records) however, asking the right questions made possible by this site, is the key.

For example, at my initial uro visit (prior to this site) I asked about what his own patient ED rates were post surgery and his response was 90%+ with no pre-surgery issues, nerve sparring etc. Well given I'm young, healthy etc I'm thinking surely I'm on the plus side of the 90% right?

After learning from this site I asked the same question at a follow-up visit but added is that 90% for someone of my age or all of your patients? His response now was ages 50-55 have about a 90% recovery to 100% pre-surgery function. ALL of his patients, all ages and stages, that number is closer to 50%. Since then I hang on every word and question every response to the point where my wife says I should have been a lawyer. To that I said - finally the big head is doing the thinking for the little head and now you're going to complain about it?

So did he lie, shade the truth to make it sound better or just answer the question I asked? Not sure but I do know what I have learned on this site has helped me understand this disease and become my advocate.

Jon
Posted 1/6/2016 12:01 AM (GMT 0)
NKinney, your comment is valid, and I get your point. Do we think it's truly random? We'd LIKE to think it's not, but is it? It appears to me that the only real way to find out would be to do a massive survey of patient outcomes with numerous variables involved and do a spread. It'll probably never happen.

A lot of good comments, guys, thanks for keeping it real.
Posted 1/6/2016 1:12 AM (GMT 0)
To add to Samsters comments, another important question to ask, which i asked, thanks to the folks on HW, is "when you tell me 97% continent, or 65% of guys in my situation, regain full erectile function, a how do you define continent, and full erectile function.

In my case, the Dr gave a definition of incontinence as "no pads", and full erectile function was "enough to accomplish penetration. That last definition might be good enough for some, maybe not for others. Same for the continence issue.
Posted 1/6/2016 6:27 PM (GMT 0)
We had a good thread a couple months ago with another member about another surgical side effect – anorgasmia. Several others chimed-in to that thread about their experiences about this frequently undiagnosed (or self-diagnosed) issue.

Anorgasmia is the inability, or difficulty, to achieve orgasm despite ample sexual stimulation.

There was an article at the PC Infolink website a couple years ago which discussed a drug study to treat anorgasmia which included men with anorgasmia as a consequence of RP. The article was very enlightening on the concept of the “slippery slope” that one gets on when pursuing aggressive treatments—particularly for clinically low-risk cases which probably should have followed an initial AS protocol instead. In this situation, the slippery slope took men down a path of side effects from the drug which was intended to treat their anorgasmia…

Imagine being that guy…having side effects from a drug to treat anorgasmia, which was itself a side effect from radical prostate surgery, which probably didn’t need to be done in the first place…
Posted 1/6/2016 10:01 PM (GMT 0)
Surviving Prostate Cancer: Good News for Radical Prostatectomy Patients
"Overall, men are highly unlikely to die from prostate cancer after surgery — even men with high-risk prostate cancer. If you do not experience recurrence for several years, your likelihood of survival for 10 more years is outstanding."
/urology.jhu.edu/newsletter/2016/surviving_prostate_cancer.php
Posted 1/7/2016 12:57 AM (GMT 0)
Pratoman brings up an interesting point: the definitions of ED and Continence are somewhat subjective. I think most of us have seen the standard ED questionaire....the key, to me, would be to have filled it out (say) every few months for a year or two before surgery, then start filling it out again after surgery, just to see what the scores actually do.

For me, I have defined continence in relation to how I was in the months or year before surgery with my 58 gram prostate. I dribbled a little from time to time before surgery, and I dribble a little now. The volume is roughly the same. If I considered myself fully continent before, I should also now.
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