Does anyone else regret having surgery? I do!

Do I regret having had a RP? For me it is a little complicated and there isn't a simple answer. Had surgery cured me of cancer, or even delayed biochemical recurrence for five years, it would have been worth it. As it turns out, I probably already had micro mets at the time of surgery. So, in that respect, I do regret the surgery. Had the surgery cured me, the terrible side effects would have been worth it, but I would still probably be grumbling about the side effects...lol.

Having said all that, I'm not sure selecting primary RT would have made me feel any better. Obviously, since I was micro metastatic at that time, there wasn't any curative treatment. At the time of treatment I was having serious urine flow issues and primary RT might have aggravated that problem, so I would still not be cured and I might have had big issues with peeing. I am convinced that if I had done primary RT instead of surgery, I would have spent the rest of my life assuming that the mets resulted from a failure in that therapy, rather than the fact that I already had mets.

I still feel like the RP was the correct decision based on the information available at the time. The only bright spot with my treatment is that at least the primary tumor was debulked. The idea that debulking the primary tumor slows down mets seems to be gaining traction.

I wouldn't say I regret having had surgery. I can't know what would have happened if I'd gone another way.

I do regret not having had a more open mind about my options. I should have talked to more doctors about other treatment options. But as they say, you don't get a do-over.

Thanks for your post. I read it when I was first diagnosed and it encouraged me to research all available treatments. I also seriously contemplated the quality vs quantity of life question more thoroughly.

I was G7 (3+4) and G6. I chose a treatment path that had minimal projected side effects but is still questionable on long term outcomes.

Thank you for your honesty and candor.

interesting. Reviving a four year old thread and beating the horse dead again.

Interesting the energy people have on this subject.

Andrew

MK1965: VIEW IMAGE

MK1965, I was merely poking at the "privileged" comments which preceded yours...and thought you would probably agree.

Privilege is when you think something is not a problem because it's not a problem to you personally.

NKinney said...
MK1965, I was merely poking at the "privileged" comments which preceded yours...and thought you would probably agree.

Privilege is when you think something is not a problem because it's not a problem to you personally.

Or thinking it is a problem because it's a problem for you.

What I am saying BillyBob, is that those horrible side effects are a life altering problem. But I don't know how many, what %, of those who had surgery suffer from them, nor for that matter, how many who undergo radiation have serious, life altering, side effects also.

What I do know is that these forums are far from a normal distribution of people who have been treated, and many who have been here a long time seems to have the worst of symptoms, which seems understandable to me.

I'm also suggesting that if the purpose of this forum is to help new folks understand what they are up against and make a reasonable intervention selection, maybe a more even handed approach wouldn't scare them off any particular treatment choice. As you say, maybe "sucking it up", without repeatedly reinforcing the most dire of consequences, although I can empathize with your frustrations, would be a more constructive approach.

For your consideration.....

Post Edited (garyi) : 9/5/2017 2:35:20 PM (GMT-6)

I had no regrets, at first.



garyi wrote: "But I don't know how many, what %, of those who had surgery suffer from them..."

You are right. The exact count is not known. Probably because someone not having sex after treatment is not as big an issue to some men as it is to others, or not having as good a quality of sex after treatment is not as big an issue to some men as it is to others. But it's a big issue for many men. Is it tens of thousands, or hundreds of thousands of men? The exact count is not known. What we do know, however, is that it's enough for there to be a slew of books, articles and QoL studies.

It's a significant and very current issue for men. I can think of no reason that it would be considered less relevant for today's participants as it was for the HealingWell participants from 4 years ago.

garyi said...
What I am saying BillyBob, is that those horrible side effects are a life altering problem. But I don't know how many, what %, of those who had surgery suffer from them, nor for that matter, how many who undergo radiation have serious, life altering, side effects also.

What I do know is that these forums are far from a normal distribution of people who have been treated, and many who have been here a long time seems to have the worst of symptoms, which seems understandable to me.

I'm also suggesting that if the purpose of this forum is to help new folks understand what they are up against and make a reasonable intervention selection, maybe a more even handed approach wouldn't scare them off any particular treatment choice. As you say, maybe "sucking it up", without repeatedly reinforcing the most dire of consequences, although I can empathize with your frustrations, would be a more constructive approach.

For your consideration.....

Thank you, Gary. OTOH, there seem to be a fair number of folks who end up with these life altering problems who did not seem to know that there was a pretty good chance they could indeed end up with them. Or for sure even more at least did not hear about them from their surgeon in advance. Should they hear about it from those who did suffer the consequences?

I agree that this forum is not a "normal distribution of people who have been treated", but when it comes to SEs I am not so sure that is the case. Observing as the noobies come here, I don't see all that much of people coming here months or years after treatment and after they realize they are stuck with some long lasting- or even lifetime- unpleasantness. What it seems to me I see way more often is folks coming here right after diagnoses- or even before biopsy- scared and seeking advice on which way they should go, how dire is their prognosis, etc. Or, coming here right after treatment(me), long before they realize what they are stuck with, still full of hope or at least looking for some hope. So I don't get the impression that folks like me are giving them a biased slant because by hearing from us they are just hearing from the small minority that have had problems that lead to grief and then sought out this forum. I think in that regard they are a fairly normal distribution of guys that chose whatever treatment, either shortly before coming here(me) or after coming here, and then later they are relating their results and SEs, good or bad. That is my impression, but I certainly could be wrong.

And the last thing I want to do is be negative to some guy who is scared to death and trying to figure out what to do. But if asked, I either have to be silent or be honest. And what I did not quite fully realize before treatment- before coming here- was that not only did I have at least very close to just as good a chance of a cure or long remission with some treatment other than surgery, but what with me being high risk some would claim I had a better odds with a different treatment. Any of you guys disagree with that? If that is so, then what have I gained by locking in these SEs that mess with my mind at least a little bit of every day? (and so many have these things so much worse than I have so far). I mean if a medical condition screws you up bad, and there is no other choice, so be it, life is tough. But that is not the case. OK, with my hi risk AS(and it's zero SEs) would probably have been crazy, but there were other choices with pretty good results and generally far fewer severe and immediate and permanent SEs. I just wish I had known some one like me to get hold of me an say "Don't do it, don't let them cut your nerves and cut out one of your sphincters unless there is NO OTHER choice, are you crazy!". Sorry guys, hate to be so dang negative, but that is just me and my feelings 3 1/2 years later. I am blessed in many ways, and things could be so much worse(and who knows about the future?), but it does not feel good to lose the things you have a good chance of losing, when you know you really didn't have to lose them. Should I hide that from people trying to figure out what to do? ( and even I do know of some positives with surgery- sleeping all night and pissing like an 18 year old- but man what a price.)

BillyBob, I appreciate all of your thoughtful responses to this old thread. If anyone took the time to read the whole thing I was one of the posters in on it at the beginning, so I appreciate that it has not devolved into an argument about treatment options.

ChrisR might not have the same regrets today as he did when he started this thread. But I think he might agree with me that his treatment might have been different had his PCa occurred a decade later.

I know his confidence in Hopkins is unwavering. I also know that only he can share his unique situation that spurred this thread. I hope he sees that it is active and will chime in. I miss him. He's a terrific guy with a wealth of knowledge. I hope is happy and healthy today... 4 or 5 years after this thread started.

The only way you can have regrets is if you are still alive....If you are still alive, your surgery probably has something to do with it...I have a hard time being regretful....Even though my surgery failed I don't regret doing it..On this journey you never look back...