Reasonable expectations for erectile recovery after surgery

John - The Hopkins link I posted above is not in the 50% range.

Are you saying the many top surgeons in America, including Walsh, who claim significantly better numbers, specially in younger and fitter men are cooking the books the way a Greek or Italian banker would?

Post Edited (davidg) : 7/8/2014 1:19:37 PM (GMT-6)

John- I just posted a nerdy thread in the PC Advocates Forum decrying the lack of consistency in how ED is measured, when they bother to even measure it. The Sanda study at some of the top university hospitals in the US used a definition of erection sufficient for penetration in the last month. They found "at 2 years after treatment, erectile dysfunction was reported by ... 65% {95% CI, 61%-69%}] in the prostatectomy group...and in men who were potent prior to treatment, 60% {95% CI, 55%-65%}] in the prostatectomy group." Other studies use other definitions and may or may not include the use of erectile aids in their stats.

But as you said, my concern in this thread was not in measuring ED rates, but on the importance of reasonable expectations. Mulhall and the top surgeons at MSK agree that expecting a return to previous levels of potency after surgery is not reasonable. Great if it happens, though.

- Allen

I had just celebrated my 65th birthday when I had DaVinci surgery. At that time, I had no problem with sexual potency, and I guess it never occurred to me that I could really lose that because of the surgery.

Unfortunately, the plumbing hasn't worked since, and though I wish it were otherwise, "it is what it is," as they say.

However, while I blame the surgery for my initial ED problems, I think I might have recovered if, (a) I were a younger man, (b) if I weren't on blood pressure medication, (c) if I hadn't developed type 2 diabetes, and (d) if I hadn't suddenly found myself four years older, ready to turn 69 next month. And don't read anything perverted into that number, please.

Come on, guys. How many 69-year-old men do you really think are NOT having ED problems. How many do you think are liars? You don't need to have prostate surgery to be impotent at age 69.

I'm neither a scientist nor a statistician, but I find a lot of merit in Davidg's comments on this issue. A guy in his 40's, treated by a competent surgeon, no doubt stands a much, much better chance of recovering sexual function than a guy in my age group. However, by the time Davidg is my age, it's likely that he will no longer be quite the stud he is today (hope I'm wrong about that, Davidg).

This is one of the issues that gets argued constantly it seems, along with "overtreatment" (which I also see mentioned in this thread. I keep promising myself that I'll avoid these endless discussions, since I've yet to see anyone crawl out from their entrenched position, yet here I am, sucked in again. Studies, studies, and more studies, and what have we really gained, except notoriety from peer-reviewed articles in some obscure journal. They can keep their studies. Most seem to "prove" only what they set out to prove, anyway. All I have is my own personal experience, and that's what I have to live with.

BTW, Walsh retired from performing surgery several years ago.   The big picture Allen raised has been obscured by much of this discussion.   The overall deleterious impact on health is far less dramatic for men who are qualified and pursue active surveillance than for those who are qualified yet pursue aggressive treatment.   And in this thread, so far we’ve only discussed sexual dysfunction…a known common side-effect of aggressive prostate cancer treatment.   Sexual dysfunction, urinary incontinence, rectal bleeding, changes in orgasm, sterility, Peyronie’s disease, change in penis length, inguinal hernia, urinating during orgasm, etc., the list is long, all leading to more and more follow-up procedures, high-priced PDE-5 pills, penile infections, artificial urinary sphincters (AUS), bi-mix, tri-mix, MUSE, pumps, slings, etc., etc.   It is an staggering number of men get to become very familiar with one or more of these side-effects after aggressive prostate cancer treatment, but what’s more amazing (and sad) is the number of men who became familiar BUT DIDN’T HAVE TO because they rushed into an aggressive treatment that might have been better left untreated.   I fully support aggressively treating the non-favorable risk cases of PC (and in fact I have never seen anyone here who is “anti-surgery” in such cases), but I think one has his head stubbornly in the sand in a way that is NOT helpful to favorable-risk newcomer cases by brushing aside the plethora of evidence about side effects by pushing a “drill, baby drill,” or “frack, baby frack” attitude about aggressive treatments being good-enough-for-me-then-it’s-good-enough-for-you.   I’m amazed that we all can’t rally around Allen’s point (from earlier in this thread) for the sake of the new (favorable risk) guys: Tall Allen said... The epidemic of overtreatment in the US is a much greater concern for me. Perhaps Mulhall's sobering statistics will lead them to consider Active Surveillance rather than radical treatments. Just as radiation used to be reserved for older men with limited life expectancy in the olden days before dose escalation (let alone hypofractionation), I hope we will see more younger men consider Active Surveillance as a less harmful alternative. Younger men are more likely to be diagnosed with insignificant, indolent PCs that do not require immediate treatment. Mulhall & Sanda are showing them the cost of treatment in quality-of-life years, which is higher the younger one is when treated. - Allen  

Jack - surgery is a very viable option for many men that might not fight your criteria. The experts say so. That's why perhaps close to 50% of men with PCa select surgery.

Your personal opinion notwithstanding, comparing our choices to have surgery with a culture of "drill baby drill" or "frack baby frack" is not only unfair, but probably less of a help to newcomers as you might imagine.

I just know if I have to have surgery I would rather go in with the expectation that impotence will be a strong possibility and risk being pleasantly surprised than go in believing that I will have a 80% chance of fairly normal erectile function and risk being sorely disappointed.

Revived thread...for MK1965 it has been 6 months since his RALP - what is the likelihood there will still be some natural recovery over the next year or so? For me - though I was aware of the risks of ED with surgery I still chose it due to my 'high risk' category (per PSA of 20) - I didn't want to go the HT + RT route which can present long-term problems also (to my understanding). As a rule what does more permanent damage - RALP or HT with RT?

A recent European study found that among men who had not yet recovered potency a year after RP, 31% regained potency by the two-year mark, and 37% by the 3-year mark. So there is still hope if one can stick with penile rehab for two or more years.

www.europeanurology.com/article/S0302-2838(16)30665-0/fulltext

Yes, we have this discussion every few months, and one reason is that the studies and statistics are so fraught with potential error. TA brings up one of the potential errors--age adjustment. Other potential pitfalls in developing a good statistical summary are (a) specific details of the surgery--anatomy is far from identical from man to man. How significant are those slight variations? (b) Actual vs perceived potency prior to surgery. How many of us really want to admit that at 55 we really weren't the stud we thought we were at 20? (c) Other physical or metabolic issues. Blood pressure, diabetes, and other disorders can play havoc with potency. And then we have the surgeons themselves. I'm another of the men who were assured by my surgeon that I had a 90% or better chance of making trifecta within 3 months (he was right, I did). How do those statements square with real data? Who knows? Have any surgeons actually published personal data like that? Use Tewari as an example (mentioned above). Has he ever published a real paper that says something like, "Over the last 5 years, I have performed 2000 RALP procedures, and here is my trifecta data from those 2000 patients"?

THAT would be interesting.

Mk1965,
Young fellas should *phrase deleted by moderator) Your personal reading on forums makes you (phrase deleted by moderator)
Do you really think people that have recovered and probably moved on with their lives are going to busy themselves with forums.
I'll be the first one you've come across that is happy with my recovery. I was 46, had 1 nerve bundle sparred, never even looked at a pad and after 11 months my erections are far more than just adequate for penetration. Admittedly, it's been stressful and I've worked very hard at it but I can now get an erectiin with mental stimulation alone and even if it had taken me another year or 2 to get to where I am now, it will have been totally worth it and a happy outcome.
I'm sorry if your recovery hasn't been as good. It doesn't mean you should give advice to young men to avoid the best chance they have of cancer cure. The fact is, whether you were one of them or not, young people do recover better from Ralp. Staging of disease is much more possible and cure rates are much more possible.

I deleted some phrases for Rule #3 violations. Please post without making ad hominem attacks. Jim

Post Edited By Moderator (Tudpock18) : 8/21/2017 5:18:40 AM (GMT-6)

If the information I filled out on those pre-treatment surveys are included in any of those studies....I can assure you there's at one participant in there that shouldn't be listened to.

Every time I filled one out....what I put down was *totally* different from what I had put on the last one. It all had to do with what was going on in my life at the time. How my relationship was going. What kind of shape my mind was in. And based on memory.....poor statisticians. Working with such a poor excuse as a cohort.

Sometimes I could be, in fact....superman. Other times....who cared?

Tdubb said...
The worst advice comes from those who haven't been through it. I'm not sure why the treated want to have newbies jump on their bandwagon.. It would be so much better to let them make educated decisions for themselves. After all they have actual certified physicians for that. There are downfalls of ALL treatments and to try and sell one over another is just poor advice. Maybe those who advise need to validate their own choices?.. Just a thought

PDA said...
Of course we do. How could we not?

EDIT: sigh, I see I just did it again: responded to an old thread)

Truly, I don't think I have ever acted to validate my own choice. Oh, true, I needed to, and wanted to, but it just can't be done. I can come up with some relative advantages for my choice, such as having that path report showing a focal positive margin and SV+, telling myself in the past that I would not know about those unpleasant items if I had had RT. But so what? I suppose I also would have had those areas covered automatically with all RT for high risk, right? Something I may have to do anyway someday. So I would not have known for sure that getting the margins covered with RT would turn out to be a good thing in my case, so what? I think I could have lived without that knowledge, wondering if that RT at the margins did me any good or not. Along with likely some far less devastating SEs as I sat at home and wondered about it. Nope, I'm not likely to try and validate my choices to a noob. In fact I have to work hard not to do the opposite, trying not to force my opinions on folks who often have already made their choice. Although there was that one guy that called me, I believe as I was just starting a hike, wanted to talk since was scheduled with my same surgeon. He just wanted to know how I felt about it all, and there I was, hiking in the woods while telling him. I believe he unscheduled his surgery for some other treatment. I can't remember who that was. I hope it worked out well for him.

Spot on Pratoman,
I've never bothered posting in my 11months, until prompted to do so after reading people's opinions being passed off as facts and advice.
In any case, some of us weren't given a treatment choice.
Anyway, back on track, it's a tough call to state reasonable expectations for recovery. Too many variables and even if you look at young people's stats, they are favouable but nobody ever thinks they will be the minority that don't get a good result. It's a roll of the dice and the older you are the more sides there are on the dice.