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.)