Would to do it again? Have surgery that is

I'm conducting a poll on my website, but I'm sure it's against the rules to put a link to my poll, so I'll ask the question to every man who've had their prostate removed. Here's the question:
Knowing what you know today, would you choose surgery again?

It's my personal belief too many men are choosing surgery without an understanding of the permanent, life altering consequences. On of the most poignant posts I've received when asking this question was the following:

Regret! Not from PC but from decision to have a radical prostatectomy.
It's now about nine weeks after surgery and things seem to be getting
worse.The physical pain from the surgery is gone but everything else is
deteriorating. There is not a minute where I don't regret my decision and
prefer to just evaporate. There is no denying it; I am now a freak. I don't
respect myself and, in all honesty, I don't know how others would respect
me either. Sleep is now my only comfort. Perhaps a very deep sleep will
help me to evaporate, permanently.


I'm not here to bash surgery. I had surgery and I'd chose it again. I'm here to say it's VERY important to speak with men further along in the journey of living life without a prostate before you make a decision to have your prostate removed.

yes

I am 6 years post op and Yes , I would have surgery again.  I was very lucky in that I have had no ED since surgery , and I can get rock hard erections with just a little manual stimulation.  I do ejeculate urine , but that is small price to pay if I can be ED free.  

Yes, I would go with surgery again. Recovery took longer than expected and included some periods of real frustration, but the results are what was needed. More understanding up front might have helped create balanced expectations.

It is painful to read the 'regret' response pasted in the first post. RR40, please pass along encouragement that it can and probably will get better. It may take perseverance and some adjustments, but it does get better.

When you ask that question, one needs to at least be aware of the cognitive dissonance in the subconscious of men who have given so much physically, emotionally, and even financially…ignoring this would be meaninglessly skewed.   Whether it’s true or not (and there is lots of literature out there about how true it may or may not be), men with even the tiniest amount of low-risk PC often feel that their doctor “saved their life” by aggressively treating their cancer.   Your question might be more meaningful if you split the responses into risk category:   if you were high-risk category, would you undergo treatment again?   But if you were low-risk, would you undergo treatment again?   These are really very different diseases (and should probably go by different names). In one book, the author (a urologist) wrote: “I am frequently amazed about how often it is the impotent man who screams the loudest in favor of the radical prostatectomy for fellow low-risk patients.   I think it is partly the Stockholm Syndrome and partly the inability to accept that a terrible sacrifice did not result in extended survival.”   Here’s some other comments on HW/PC or elsewhere: Link to earlier thread titled:    “ Does anyone else regret having surgery?   I do! ” Or another thread from 2012:   “ Anyone regret surgery? ” Or here’s a link to a NY Times article titled:   “ Regrets after Prostate Surgery ” Or here’s a link to MSNBC article titled:   “ Surgery Regrets:   I want my prostate back! ”  

I vote yes even at this stage. I am 2 weeks post catheter removal, 3 weeks post surgery I leak and I have ED I'm 52 yrs old and I have a long recovery to what I end up. Through the research I did I found that every treatment had repercussions. The alternative was death, I have a 17 yr old daughter whom I hope to walk down the isle, I can still look forward to that. Do I feel sorry for myself some times you bet but I also don't believe anyone has cancer and "recovers" totally and returns to your life before just the way it was.

If I had it to do over again, I would have investigated brachytherapy more than I did. I actually did end up by mistake with a consultation with a leading brachy doc who said I was ineligible--my prostate was too large, I think was the reason--but I hadn't paid brachy much attention and was deciding between surgery and EBRT, which were always numbers 1 and 2 on the list of treatments in everything I read about PC. From what I've seen on HW, there's little doubt in my mind now that brachy is the superior treatment in EVERY respect, and certainly for lesser side effects, so I wish I had been more aware of that and pushed harder to see if I couldn't somehow get that for myself. Also, now that I seem to have a recurrence underway, I wish I had paid more attention to the argument from the radiation onc that, in the case of a recurrence, surgery would turn out to have been completely unnecessary. I went for surgery on the basis that I preferred a "mechanical" fix as opposed to a "nuclear" fix, but in hindsight that seems like a rather simplistic approach. All water under the bridge now, and of course much of it depends on the results, which in my case have not been what I expected, but yes, in truth, I do have regrets.

Casey59,
You raise a great point. I'm leaning toward believing most men react to the news of PC based on their own experiences with other people living and dying from a diagnosis of cancer. I think the stats are already in. It's an established fact that too many men are choosing aggressive treatment when their diagnosis doesn't call for it.

I have another question on my poll and maybe men might answer some of these questions as well. If men would copy paste this into their answer and put a check by those which are true, so it would look like this if it applies, and I'll give my answers:
X I'm less interested in sex
X My erections aren't as hard
My penis is smaller
X During sex I leak urine
X I enjoy sex less
X I feel less manly in the bedroom
X The intensity of orgasms are diminished
My erectile abilities remain the same or better
My enjoyment of sex remains the same or better
My interest in sex remains the same or better
I don't leak urine
My level of hardness is the same
The intensity of orgasms remains the same or better
I'm happy with my sexuality post surgery

Thanks for so many responses so quickly

Phenom
Thanks for the very candid answer. I do wonder if whether your satisfaction with the decision is greatly dependent upon where you land with urinary control and erectile functioning. 31 months post surgery I still leak urine some of the time when I sneeze, cough, etc. I also leak some urine during sex. Erections with ED meds are a hit and miss. Night time erections occur once in a blue moon. If I'm dealing with these issues a year from now, I may regret my decision as well. For now I'm still ok with it.

I trusted my Urologist, he is also a good friend. I believe he was brutaly honest about the possible side effects. I found this forum well after surgery so it did not have an effect on my decision. I did however look at Yana and used the tool to sort by surgery and radiation. The only side effect I have is from pCa, PSA anxiety which has nothing to do with the surgery. I don't have any physical side effects from surgery, I am back to normal 100% without any meds.

Purgatory,
I'm amazed at all you've been through, and yet where you landed with life long changes. It is good to hear some men regain everything back and/or better.

To the Moderator,
Thanks for joining this discussion. Would you mind sharing the unpleasant side effects you've experienced post surgery, and how long it's been since your surgery.

Rick,
very much so. I just updated my profile to reflect my continuing problems with ED, with which I am going to start dealing more aggressively. And, of course, my apparent recurrence makes the surgery seem like a complete waste of time, money, and suffering since I will probably be in for radiation anyway. Also, the tantalizing idea that brachytherapy might have left me without any ED issues is a tough one to ignore. As I said, the more I see here on HW, the less I understand why surgery continues to be viewed as the so-called "gold standard" and as the treatment pushed foremost and and hardest. The evidence seems increasingly solid for brachy being as effective--or even more effective--as the others with SO much less difficulty of treatment and side effects that it's almost a wonder why someone would choose anything else.

RR40,

Yes, I used this site, yananow.org, and many others to understand the CLINICAL implications of my choice before undergoing RALP. This was all in addition to the input from my doctors. Experience turned out to be a somewhat different game, primarily in terms of timing. As that difference unfolded my sense of connection to the community at HealingWell became stronger.

As I've said before, statistics are about populations but an individual case is uniquely personal. The distinction can be significant for some.

As for the poll you added, I'll decline answering even anonymously. I will point out though that the 2+ years from before diagnosis to present day may well involve some loss due to simple aging. As a result a straight up before and after comparison may not be entirely valid. In my view, a realistic perspective allows for the fact that our lives progress through phases.

Explorer