Regretting prostate removal surgery
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I wonder often if I did the wrong thing. But when you are told you have cancer growing in your body it is a shock. I definitely wish I had spoken to more than one urologists before going ahead with it. I wonder if by pure chance, my surgery was not perfect for what ever reason. Should I have had radiation so soon after surgery? I was told it would be very straight forward and I would regain full continence and recover from ed. Nothing worked out that way. It is frustrating to hear so many other success stories and complete recovery. The same doctors now say I am unfortunately in the minority. But I’m very grateful for a non detectable PSA.
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I'm almost 64 and just over 2 years after surgery. Would I do it again? No I wouldn't as I feel I wasn't truthfully informed of the real impact, side effects and still not fully continent. I feel there's many more who suffer from ongoing incontinence after RP than what I was led to believe. Anyway its done. My PSA is rising, I've to see an oncologist and my urologist recons I'll have radiation and put on ADT which won't be happening. I'm for quality of life. I don't want to go through all the associated side effects from these treatments, be totally miserable and in pain then something else kills me. I would rather enjoy what I have left of life... That's just me and my wife understands. Everyone has a different perspective of what life means to them.
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I am a year and 3 months past the RP. I then got cancer in my neck and tonsils left side that I just finished Chemo and Radiation in November. I met a guy at the radiologist that opted for radiology the first time. He was back again because his PSA was rising quite rapidly and now he no longer a candidate for RP. My urologist told me when I opted for RP, that is a possibility when going that route, so I chose the radical. I would probably do it again. My PSA is still undetectable after a year so it was, I think, the correct choice for me. Yea, the leakage was a problem but controllable with the pads. Was one a day except when working around the property, before this new cancer in my tonsils and lymph nodes on the left side of my neck. With this treatment, it got worse but now I am trying a pad again for the first time in the last 3 months. Need to make those work for me again as I go back to work at the end of the month. I got long winded but yes, I would opt for RP again and deal with the rest until I reach some sort of new normalcy.
Archives1
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Wow. i'm surprised there are so many who feel the way i do. treatment regret. I was lied to by the surgeon about recovering my sex life and incontinence and if there were some way to take the cancerous prostate back and restore my life to what it was, I would do it. I would rather have 5 more years with prostate cancer than 20 years with all these side effects. All of the doctors who treated me were not honest about the after effects of both the surgery and the radiation (35 treatments started 2 months after rp). Its 10 months since the RP and 4 months since the end of radiation and I still hope I'll recover my continence and I'll get an erection, but I don't see it happening the way the surgeon said it would happen. And I still have stomach issues since a couple of weeks into radiation, which the RO insisted had nothing to do with the treatments. I had to refer him to google. In any case, people who tell me I should be grateful I'm alive can't tell me I wouldn't be alive anyway. I would undo what's been done. And I would likely have already been across the country enjoying my retirement, and have been to England and France and most likely planning my trip to Thailand. Instead, I'm planning a trip to a new urologist to see about a sling.
Archives1
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When I first got a high PSA ( actually the first one I ever had) of 10+ I made my the first trip to a urologist. I was 56 at the time. Anyway the urologist repeated the PSA and it was just north of 12. They did DRE as well. Dr. talked to me and scheduled a biopsy and provided me with a book about Prostate Cancer and all treatment options, side effects, types of cancer etc. I went back for biopsy results well informed and we discussed various options, some of which I was not eligible for. I had made up my mind the hospital I was going to before hand and my local Dr. was fine with that.
I am three years out and just recently have been able to start feeling comfortable sleeping without a pad overnight.
Yes I still have a little difficulty with incontinence when I sneeze, cough, laugh, turn the wrong way, etc. ( just a little squirt). And yes ED is pretty bad.
Long story short. I had an aggressive tumor and had RP. My PSA continues to be undetectable and I would do it again. I am alive and do almost anything I want. Well everything except spontaneous sex. That has to be pretty much planned for and timed and is somewhat inconvenient but not that bad for everything else to be as good as it is.
In short we make our individual decisions and live with our choices with emphasis on “live”. This forum has been great for me on my journey and am grateful for all those that have shared stories similar to mine regarding prostate surgery and incontinence.
I am three years out and just recently have been able to start feeling comfortable sleeping without a pad overnight.
Yes I still have a little difficulty with incontinence when I sneeze, cough, laugh, turn the wrong way, etc. ( just a little squirt). And yes ED is pretty bad.
Long story short. I had an aggressive tumor and had RP. My PSA continues to be undetectable and I would do it again. I am alive and do almost anything I want. Well everything except spontaneous sex. That has to be pretty much planned for and timed and is somewhat inconvenient but not that bad for everything else to be as good as it is.
In short we make our individual decisions and live with our choices with emphasis on “live”. This forum has been great for me on my journey and am grateful for all those that have shared stories similar to mine regarding prostate surgery and incontinence.
Archives1
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@jim11776 Do you not think at the end of those 5 years you would be saying just the opposite? I would gladly stick around for the adventure for as long as I am able. I plan on retiring at 70 so two years to go, then I am off to Texas to help my friend sail his boat and fish for whatever will get on the end of my pole. Or spending more time with my kids all over the country or just staying home and volunteering my services at the vets hall of helping out my fellow vets right here in the foothills of the Sierras. The options are too many to limit myself to 5 years. I hope you work through your issues on this matter and see that there really is too much to live for if you have the right mindset. Godspeed.
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Had a rough recovery and severe incontinence which required corrective sling surgery from a more skilled surgeon after over two years in a soggy diaper. Lost size and solid erections a thing of the past. I'm 2 1/2 years out. But I watched my father and my maternal grandfather succumb to metastisized pc, so in comparison I've been fortunate. I encourage those with long term incontinence to educate themselves on other options. To be dry again seems like a miracle.
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It's been 3 years and it socks. There was a diffent procedure called hifu. High intestity focused ultrasound. It was just fda approved but they told me my Gleason score was 8. They have Done over 100,000 I. Mexico and Europe. But they don't like to do them if the Gleason score is over 7. After they took out my prostate my Gleason score was only 7. My buddy that moved to Mexico 10 years ago had it done 5 years ago. You wake up the next day take 2 aspiring. And all is good. He has been cancer free for 5 years. Imagine how mad I am
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@Rallim I had both radiation therapy and ADT, started almost a year ago. I will find out next month if they did me any good. The side effects have been ongoing and awful. I'm with you about quality of life, which cancer treatment has markedly diminished for me. Like you, I do not think I was fully informed of the impact surgery, radiation therapy, and ADT would have on my quality of life. They might have told me, but at a time when I was still reeling from the diagnosis and not fully comprehending what was being told to me. At 63, I have to learn to make the best of what I still have left. Life without sex and companionship because of the erectile dysfunction and incontinence makes for a barren existence.
Archives1
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@jim11776 I was where you are now 4 months after radiation. I was depressed and angry about being lied to by the head of urology, the head of radiology and the head of oncology for a prestigious Boston hospital. The last four years have not been much better in trusting doctors. I have come to accept where. I am and still angry, tho I am not as depressed about it. It takes time. No one expects cancer. You learn to deal with it. I still have an orgasm and I stay dry with condom catheters. You learn to adjust and go on. Keep the faith. Good luck.
Archives1
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Don't any of you guys with severe ED try that bimix or trimix that you inject? I read a few comments about nothing working, but have you guys looked into this treatment? It worked for me initially.
I feel lucky because I'm a year and a bit out from my RP and I'm leak free and can get it up. Sometimes it's not perfect but we take what we can get. If I pop a pill it's all good.
Before my operation I was well advised about the possible side effects but didn't want that crap growing inside me. I was happy to take the risk. I'd never bag my urologist because he saved my life.
I feel lucky because I'm a year and a bit out from my RP and I'm leak free and can get it up. Sometimes it's not perfect but we take what we can get. If I pop a pill it's all good.
Before my operation I was well advised about the possible side effects but didn't want that crap growing inside me. I was happy to take the risk. I'd never bag my urologist because he saved my life.
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