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Posted 4/25/2016 3:44 AM (GMT 0)
I had my prostate removed in 2013
The Doctor told me that he spared the right nerves
Found out later in his post op report that HE removed both sides
A year later I started to see a sex therapist and she was shocked that my Surgeon did not put me on a Cialis regime before and after the surgery
I started taken the once daily Cialis and after a while I noticed a tingling sensation in my penis area
Some of the nerves were regenerating
I don't know if this was because of the Cialis
I do get some rigid erections but not like before the surgery also the erections are very short sometimes 4 inches sometimes less
As a result of this my wife left me for a younger man
I guess what I am trying to say is choose your surgeon and do your own research before you undergo any medical procedure
I wish I had
I hope this helps at least one person
Posted 4/25/2016 4:58 AM (GMT 0)
Side effects and complications can affect your self esteem and take over your life if you let it.

Surgeon induced positive margins
Bladder neck sutures came loose
Blood thinners for 6 mos. to a year for blood clots
Dilation of bladder neck for scarring (in 2 weeks)
And that's just for starters.
G/F of 6 years left me (good riddance)
Etc etc etc on and on and on

Don't dwell on the past.

Keep your eye on the ball silo. Maybe things can be worse...but...not TODAY with what I can control.

"When one door closes, another opens". But what the sob's left out (or maybe they said it and I'm just now hearin' it) is the part that when the other door opens....it's up to me as to whether I walk through it or not. I'm grateful for every breath i take (...for the most part).

You've still got living to do.

And i agree with the main point of your post. A pound of effort is worth an ounce of cure with PCa.
Posted 4/25/2016 5:50 AM (GMT 0)
The possible side-effects from prostate surgery are well known. If your surgeon CURED your prostate cancer, then he did his job and you got exactly what you paid for...

When treating PC, impotence is part of the package. Surgery or radiation, some degree of impotence effects all of us, some more than others..There are many ways available to overcome this even in severe cases...
Posted 4/25/2016 12:07 PM (GMT 0)
I agree with Fairwind. EXCEPT, there seem to be errors of omission. My understanding is that Cialis or one of the other similar drugs is always used to promote blood flow immediately after cath removal. And not doing so can result in tissue death or shrinkage. So it seems like while the surgeon did his job in curing cancer, he didn't do a great job of treating the whole patient.

But what's done is done, as IT said. So the best thing you can do for yourself is look forward and do what you can to correct the situation from here. Great that you are being proactive about it and seeing a therapist.
Posted 4/25/2016 1:19 PM (GMT 0)

Silo2552 said...

I guess what I am trying to say is choose your surgeon and do your own research before you undergo any medical procedure
I wish I had
I hope this helps at least one person

This is so true! even choosing an excellent surgeon doesn't mean that they know much about the long term side effects. I think DH's surgeon did an excellent job with the surgery itself, because though she removed both nerves and an inch of bladder, he's mostly continent, and has regained some sexual function.

However, she insisted that he would lose no size, and when he developed peyronies insisted that it wasn't. When he developed lymphedema she said it wasn't. While she mentioned sexual rehab a couple times, she was very discouraging about starting it.

And of course as is so often the case with a urologist/surgeon, she recommended surgery and dismissed radiation as a primary treatment, saying he would likely need it after surgery. I wish every day that he would have consulted with a couple radiation specialist before surgery, but he completely trusted his surgeons advice.

When i was first on HW posts like yours were very helpful.

....Have you tried injections? They can work extremely well.
Posted 4/25/2016 1:34 PM (GMT 0)
Hi Silo. Welcome to the forum, but really sorry you have to be here.

To thine own self, be true. Not in the biblical sense, but in simply realizing your life is something you can offer to someone to share, but at the end of the day, it's YOUR life.

I know it's easy to say that seeing where I am in my journey with PCa, and I do know, many things are-a-changing, even while I am typing.
For every girl out there who is looking for some "action" there are tons who don't want to have to worry about such stuff.
Nice to at least know where she stood BEFORE she ever got to spend the life insurance money (TIC)(Not implying that you will be checking out any time soon....just saying)

Chin up, and ENJOY!!

Newt
Posted 4/25/2016 2:02 PM (GMT 0)

Fairwind said...
The possible side-effects from prostate surgery are well known. If your surgeon CURED your prostate cancer, then he did his job and you got exactly what you paid for...

When treating PC, impotence is part of the package. Surgery or radiation, some degree of impotence effects all of us, some more than others..There are many ways available to overcome this even in severe cases...

Fairwind, I respectfully disagree on both points. Silo's physician actually lied to him and certainly did not treat the whole patient including his sexuality. I'm comfortable with his description of his doc and do not think he got "what he paid for". And lest any new member think that "some degree of impotence effects all of us"' that is simply not true. There are many, many men on this site who did not experience any lasting impotence - including both radiation and surgical patients.

@ Silo, welcome. I am sorry you have to be here and hope things brighten up for you. As others have noted, there are ways to work on your sexual issues and there are folks here and on franktalk.org that provide helpful info. And, thanks for you post. It may indeed help someone to do a better job of investigating their doctor and/or their treatment.

Jim
Posted 4/25/2016 2:08 PM (GMT 0)
I wholeheartedly agree with Jim.
Posted 4/25/2016 2:19 PM (GMT 0)
I also don't think that a surgeon (or RO for that matter) is just responsible for treating the cancer and SEs aren't in his/her wheelhouse. A cure is certainly the primary goal, but hey the other stuff matters as well.

Silo, sorry to hear about how you're doing, but hoping you continue to make progress on the "tingling" that you mentioned.
Posted 4/25/2016 2:49 PM (GMT 0)
Tud:

I have to agree. I find it hard to believe that the doctor would say he spared some nerves and then it turns out he didn't. That is a flat out lie. I wonder if something just got lost in the translation.

I think with surgery, ED is by far the #1 continuing SE. We see it here all the time. Folks have some initial problems with incontinence, then that improves greatly (in most cases it seems to resolve 100%). ED seems to be a continual issue. As you said, many can get ED resolution.

Mel
Posted 4/25/2016 3:05 PM (GMT 0)
Silo2552, welcome. I, too, am very sorry to hear about your disappointment, but I am also very encouraged about your eagerness to help others who may follow in your footsteps. I hope that you can stick around for a while to “pay it forward” to other newcomers while you also take-in the lessons and experiences of HW/PC members who have passed down the road of side-effects similar to what you are experiencing now.

I also agree that your surgeon seems to have failed miserably in omitting important aspects of your treatment plan. I can only hope that your case truly “needed” to be treated…we see SO MANY who also join us late after suffering the side-effects from a treatment which was not really needed; cases where the patient experiences only the “harms” and no “benefits.” We were not able, in your specific case, to help shed light on the important considerations a newly diagnosed man should weight prior to ANY decision about treatment, or no treatment, but together maybe we can help the next guy.

Your comment is absolutely spot on:

Silo2552 said...

I guess what I am trying to say is choose your surgeon and do your own research before you undergo any medical procedure
I wish I had
I hope this helps at least one person


We're glad you're here and can share your experiences amongst men who have traveled a similar road, and to greet the steady stream of newcomers.

Again, welcome.
Posted 4/25/2016 9:15 PM (GMT 0)
At 3 years post surgery or post radiation, 50% of prostate patients suffer some degree of impotence, regardless of whether the surgery was "nerve sparing" or not. That's just the way it is. If your surgeon tells you differently, find another surgeon.. They will also tell you that a prostatectomy will no effect on the length of your penis. You can take that with a grain of salt too.....The surgeons primary duty, his goal, is to CURE your cancer, not protect your potency or continence..If your primary treatment requirements are to preserve your potency and continence with a cure being secondary, then better stay away from surgery period....

As always, just my Humble Opinion....
Posted 4/25/2016 9:17 PM (GMT 0)
Fairwind:

Is it not incumbent on the surgeon to be honest???

Unless I misread something, according to the OP he said the doctor said he preserved some nerves when he did not.

(Other than that, I agree with you)

Mel

Post Edited (compiler) : 4/25/2016 3:22:52 PM (GMT-6)

Posted 4/25/2016 9:49 PM (GMT 0)
So the surgeon should do nothing in terms of making recommendations for penile rehab? Just get those patients into the OR and out? "ED? Sorry, not my responsibility. Next!"

I think the guys here that have had good surgery experiences were treated more holistically.
Posted 4/25/2016 11:23 PM (GMT 0)
Michael:

Good points. I know for me, my surgeon and his team discussed at length all the potential SE. After the surgery, they had a seminar for the just operated-on patients where they discussed what to do about all the SE.
But, really, in general, once the surgery is done, I think that tends to be it. At least that's the sense I get.

Mel
Posted 4/26/2016 2:51 AM (GMT 0)
Be careful what you say fair wind..their is blood in the water still………….It could be the poster did not hear him right. I am of the opinion that the doc could have spared a nerve… how would you explain erection of a rigid nature of any kind. You may think it is the responsibility of medicos but ED is way done the list on a whole bunch of of them especially at regional and podunk hospitals. I like to get both sides of the story…but my sense is {I've evolved with new thoughts since I started this } it was his protocol to remove one side…based on clinical pathology, and once inside , didn't like what he saw and removed the left bundle as well. This would explain the lack of ED therapy by the surgeon and it is not malpractice to do what he fe felt was necessary. His "sin" was not to tell the threader that he did it and why.. He may have told an assistant to give the bad news{actually good news if doc found cancer their.}} So "go home to your wives and children folks there will be no hanging to nite"
I don't think fair winds assessment was that far off…That',my entitled opinion…Silo Oh its been 3 years hows the treatment working so far… A long time to be bringing the issue up…bur whatever The good ..the ..bad and the ugly all have a place on this forum folks
Posted 4/26/2016 10:39 AM (GMT 0)
I think it IS incumbent on the medical professionals to provide real, timely information. Which means frank discussions about what is going on and what the possible (probable) side effects of the treatment are. This is the "informed" side of informed consent. And, it's something that relatively few doctors are very good at.

It's also, IMO, incumbent on doctors to welcome second opinions and provide referrals to other specialists, even if they aren't asked. As in, "I'm a surgeon, I'd suggest you see Dr. X down the hall and talk to him about radiation therapy" And THAT kind of statement is even rarer than the provision of true informed consent.

We've been around this barn many times, and while I fully embrace the idea that I have to become my own best advocate, and seek as many opinions as I need to get comfortable with my decisions, this doesn't give the medicos a free pass.
Posted 4/26/2016 4:02 PM (GMT 0)
Im still betting it is my scenario and Silo was told pre operation that he would have to take the left, but would save the right…things changed and then everything went crap.. Im sure if the surgeon took both out he fell it was needed. In any event something was " lost in translation "The medico did his best..it ws Silos'chosen treatment and chosen medical institution. Also it may be "incumbent" for a medico to do dis or dat… but if you want dis and dat do the homework and find who does do your specific dis and dat. See what I mean about blood in the water... Fair Man . 99% of what passes tween forums and medicos[ medicos less so but still} are opinions…Jack H is no different than the rest of us cep tin a bit younger. He was glad that you 'came clean' and stated it was only an opinion…forgiving you and then proceeding to call you out anyway.. I would say it was telling…but its good to hear about someone by their words…And Jack H , just so you know.. that is my opinion..
Also silo posted on 4//24 it is now 4/26…one post 1 post and nary a word since… a thanks or rebuttal . Again the lag in the time tween the "dirty deed" and tale is disturbing … I know anythings possible…but the simplest explanation is usually the truth. Too convoluted
and pitching the brothers opinions one against the other…1 post… something is afoot.. If he doesn't return and scold me and/or gives us a tale that has a bit more…not vertically but depth wise.. I am dead to this thread and if he does I'l take my lumps… and grow from them Ok off to surf but have some thing to grind first …no bozo ax is sharp its coffee yea thats the ticket…coffee.. Perhaps the thread should be locked its mystery has no value, but disharmonic vibes
Posted 4/26/2016 4:13 PM (GMT 0)
Strangely, an expression comes to mind.... "DO NO HARM" I believe it's part of the hypocratic oath?

Unfortunately, as we are all aware, the nature of PCa makes it difficult, at best, do even do little harm.

Somewhere in all of this is a balancing act. Surely, there are some clinicians out there who may not be your best bet when throwing the treatment dice, but I think we can all agree that they are few and far in between. Oops is not a pre-curser.....it's an after thought, and if in your consultations before treatment there are any oops, then run away....quickly.
Posted 4/27/2016 3:43 PM (GMT 0)
Well said
Posted 4/28/2016 5:23 PM (GMT 0)
Bottom line...he might have been a very skilled surgeon, but he was also very unprofessional.
Posted 4/28/2016 9:45 PM (GMT 0)
Yes…Jack…especially with out the surgeon's side of a very old tale..
All of this "proves" we are what we believe we are…at least no one starved tween the proverbial 2 stacks of hay holding a dead frog in a slow heated boil… One post…one troubled post sufficient unto the day...
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