Regretting prostate removal surgery

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Varies by urologist. My 2 plus years of incontinence was caused by my surgery, either the way it was cut or stitched or both. Different surgeon fixed with sling. Grateful for treatment but 2 1/2 years of unnecessary misery and never knowing if this was a lifelong problem was unnecessary. All surgeons are not created equal. Don't regret the surgery. I do regret the surgeon I chose. Should have been more selective.

 

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My Gleason was 9, and the docs explained all the options well. As it turned out, my cancer was so aggressive that it had already spread outside the prostate capsule by the time I had the RP, a little over 3 years ago. I then had to have the radiation and ADT. The radiation damaged my bladder leading to almost full leakage. I’ve since had the AUS surgery, and am 95+% dry. My only original options were 1) realize that the cancer was aggressive and would spread quickly if untreated; 2) radiation and ADT, and hope it got all the cancer, but this choice would preclude a later surgery. 3) surgery, which left open radiation and ADT as possible follow on treatments. I chose 3, and would do so again.

 

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@993man i suppose its easier to say you'd never bag your urologist because he told you what would happen and your quality of life is far greater than many here who are still leaking and have lost sexual functioning. My surgeon was a lying POS by telling me what he did and omitting what would actually happen. Did he save my life? don't know that for sure because I don't know how long I would have survived had I left things alone.

 

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@JoelCairo I hope your results next month show positive results. As I said in my last post my wife understands how I'm feeling and my concerns about future treatments. It does give me some sleepless nights as, excluding the bloody cancer I'm a fit guy for my age. Can I ask what side effects you suffered from ADT? I've watched some videos of guys on it and it doesn't look pleasant. As I said good luck for next months results.

 

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I went into my rp with the understanding I could have incontinence and ED. I wanted the cancer gone. At 18 months I have both of these and still a good PSA. I can control the incontinence by wesring protection and have learned to accept this. ED is not as big of a problem because I did not have an active sex life. My big problem was I had pelvic pain which stopped me from sitting, caused urinary frequency, urgency, lack of sleep, and shooting pain. I had pelvic pain issues prior to surgery but the surgery made the issue intolerable. I finally got a pudendal nerve block 2 weeks ago and the pain is well down and manageable. To me I am happy with how I am, I can manage the incontinence by wearing protection but the pain I could not tolerate and it was impacting what I could do.
Knowing what I know now of me having pudendal nerve problems I would not have had surgery. My pundendal nerve is hypersensitive and I am hoping my pain will stay low.
Best wishes to all.

 

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Wow, this is an interesting and enlightening post! Prior to my surgery I had multiple conversations with my surgeon and other urologic surgeons and oncologists about potential outcomes. I was 66 years old, healthy, Gleason 6, and had been on active surveillace for 1.5 years. Going forward following AS, I wanted to go with more mainstream treatements - removal or radiation so that is what I investigated. Read books, articles, studies and talk to MDs. I didnt rely on one surgeon or oncologist but felt I needed to do my due diligence! When a biopsy appeared to show signs of some cancer spread within the prostate, I decided I needed the aditional treatment and opted for the laparoscopic robotic prostatectomy. I went with this approach because it would allow pathologic analysis to determine whether the cancer was contained, close to prostate margins, or metastatic. Although I know of men who have had success with radiation in its various forms, I chose not to use it because it too can have many adverse effects including radiation burn, incontinence, adverse effects on bowel movements, urine retention and/or difficulty in urination and, most important to me, the inabilitry to have follow on radiation treatment if the cancer had spread! In the 15 months following my surgery I have been PSA undetectable and and pathology of my removed prostate showed the cancer was fully contained. Radiation does not allow this clear information of procedure success! However, I still suffer from mild to moderate incontinence depending on activity which I manage with shields, penile clampe and occasional external catheter use. So would I do surgery again given my ongoing incontinence? 100% YES! To me the most important goal was removal of the cancer. For anyone reading the responses to the post and considering surgery vs radiation vs some other treatment, I simply suggest do your research of these treatments, get multiple MD opinions, and talk to men who have had the treatments. In the end, you make the hopefully well informed decision on your treatment ... not your urologist, surgeon, or oncologist!

 

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5/27/21 - Prostate cancer diagnosed decided to remove it.
8/26/22 - AUS to solve incontinence issue
Last 6 months using pump to solve ED issue
So, life is basically back to where I was and I’m cancer free (so far). I’ll take it!

 

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@DrRick AUS. Great. Another surgery to fix problems created from the first surgery. Additional surgeries to replace or repair the AUS every few years. I'll pass, thanks. I'll continue to do kegels and use padding.
As I stated in my previous post, I tried EVERYTHING for ED, and NOTHING worked. Thanks for the suggestions, though.

 

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@Rallim Side effects I suffered from ADT, and continue to suffer 6 months later, in no particular order:
-exacerbated ED
-weight gain, esp. in my middle
-hand cramping in both hands - including right-wrist soreness. Regular arthritis ruled out by xrays; have not yet been tested for gout
-uncontrollable hyperglycemia - I'm diabetic
-Fatigue - which has mostly abated 6 months out

Interestingly, during radiation therapy (39 treatments), my urinary incontinence went away almost entirely. I became so confident that I felt comfortable wearing regular underwear again and sleeping without a bed pad. The further out from treatment I get, however, the more incontinence I seem to have, which has been a real disappointment. Even my urologist expressed surprise by this paradoxical development.

I continue to do what I can to counteract the side effects. For example, I exercise regularly and watch what and how much I eat to control the weight gain and hyperglycemia - with varying degrees of success. I stretch my hands and fingers to loosen them up when they start cramping. And I occasionally stimulate myself to help with blood flow to my penis for erections. I can only hope over time things will get better, and I'm keeping my fingers crossed that my PSA remains undetectable. If I have to go through more cancer treatment, I will likely give up all hope of having any quality of life to speak of.

 

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I am approaching 7 years since my combined prostectomy and diverticulectomy. Do I regret having the surgery? I don't think so. I do experience incontinence and ED. Since my surgery, I have accumulated a number of other health issues including heart failure, sever spinal stenosis, and peripheral neuropathy. I have also had 3 rotator cuff surgeries and refuse to have any more appliances implanted in me. My back issues have exacerbated my incontinence. As a result, I manage by wearing diapers. It took some time to accept that I needed them, and even tried wearing conventional underwear but with little success. I guess I would rather be safe than sorry. Adding to all this, my wife passed away suddenly from Creutzfeldt Jakob disease which has taken its toll emotionally. I'm 76 years old. Getting old is not for sissys.

 

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Your post is a reminder for me that no matter how bad things are, they can always be worse. I wish you well.