Do you regret having had a prostatectomy vs. radiation, or vice-versa?

Posted by sanDGuy @sandguy, Jul 21 8:11pm

Just wondering whether there are some of you that already had a prostatectomy that they regret, and wish they had instead opted for radiation. Conversely, perhaps others chose radiation, but now regret not having just had a prostatecomy.
I'm currently wrestling with this question beforehand, and there seems a consensus that the curative results are equivalent, so I guess I'm wondering more about side effects and the like.
It might be helpful if you mention how long ago you had the respective procedure, please.
Thanks in advance!

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I have zero regrets about my decision to get surgery. Like most guys who have gone through this, I asked myself the same questions you are asking - should I or shouldn't I? In the absence of a magic pill to fix prostate cancer, you have the two leading treatments and all the less popular options.

The decision for surgery wasn't made without significant research and it was recommended by nine doctors - that's enough for me to say it's the best course of action for me.

As it was put to me, by pretty much everyone: at your age there's no argument that surgery is the best course and it still leaves all the other options on the table if you need them. I'm 54, so every doctor felt my ability to overcome any side effects and recover easily was high. I also had a cancer that was not as advanced as many on here, meaning surgery was likely to be a one-and-done treatment (fingers crossed).

The other thing that I think is neglected in this conversation is that I was told repeatedly that, at 54, radiation now meant that I was not only likely to see the side effects of radiation in my life but it was almost guaranteed. Radiation can cause other cancers and other issues later in life and you should talk to your doctors about those things. It's one of the reasons that if you are on the younger side of the spectrum, say sub 70, doctors recommend surgery because you would see those radiation issues - but at 70+ it's less likely that you'll live long enough of a natural life for those to have a serious impact.

None of the treatments are a magic pill. With RARP you might be incontinent or have erectile disfunction (I had neither) - both of which resolve in the vast majority of men. With radiation you can also have both of these things plus risk cooking your bowels, leading to bowel incontinence as well - or perhaps bowel issues later in life. With the other treatments, such as Cyberknife and TULSA PRO, these newer procedures don't have long efficacy data so there is no guarantee that they are as effective after 10-15 years as radiation and surgery have proven. Everything has its risk, everything.

I think you are likely to get a different answer from everyone who isn't in the medical profession who deal with this every day. I spent countless hours on Google Scholar, talking to doctors, and taking the comments here into consideration (and verifying what I read with other sources because none of us know one another).

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Profile picture for jayhall @jayhall

My Post op PSA blood work is coming up soon and I will know more after I get those results. Do I regret having a RARP. My current answer is No I do not. I have little to no incontinence and I'm slowing regaining my ability to get an Erection. My PT for my Pelvic floor was a success and I no longer dribble, etc. My life is returning to normal and overall I am feeling better.

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Just do. Regret is the most useless of human emotions, no matter what one decided. We have to live our lives in forward gear.

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I'm not a medical professional and I have no idea what's best for you. You asked for personal experiences so here's mine: I was 70 last year when I had NS RARP at Mayo Phoenix. I'm coming up on 13 months and I'm completely back to normal (never any incontinence) with 2 exceptions. First, without my enlarged prostate I urinate like I'm 30 years younger. I like that. I still have very mild ED, but I can have satisfying sex and frankly I was on sildenafil before the surgery so I wasn't starting from a pristine state. For me, I had a terrible family history of prostate/breast cancer and sure enough when they did the pathology on the prostate both cribriform and IDC were found. I also had a bad family history with radiation side effects. I'm the first to agree that anecdotal information isn't valuable, but when it's your own personal family experience it carries a little more weight. Also, I had access to an outstanding surgeon at an NCI recognized CCOE. I picked surgery and I'm glad I did. But if I hadn't had access to an excellent surgeon I don't know which option I would have chosen. Best wishes with whatever you decide is best for you.

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Profile picture for retireditguy @retireditguy

I'm not a medical professional and I have no idea what's best for you. You asked for personal experiences so here's mine: I was 70 last year when I had NS RARP at Mayo Phoenix. I'm coming up on 13 months and I'm completely back to normal (never any incontinence) with 2 exceptions. First, without my enlarged prostate I urinate like I'm 30 years younger. I like that. I still have very mild ED, but I can have satisfying sex and frankly I was on sildenafil before the surgery so I wasn't starting from a pristine state. For me, I had a terrible family history of prostate/breast cancer and sure enough when they did the pathology on the prostate both cribriform and IDC were found. I also had a bad family history with radiation side effects. I'm the first to agree that anecdotal information isn't valuable, but when it's your own personal family experience it carries a little more weight. Also, I had access to an outstanding surgeon at an NCI recognized CCOE. I picked surgery and I'm glad I did. But if I hadn't had access to an excellent surgeon I don't know which option I would have chosen. Best wishes with whatever you decide is best for you.

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I think that's an important distinction that is often not talked about: breast cancer history. Breast cancer and prostate cancer are related in the BRCA1 and BRCA2 genes. While you can get a gene test to see if these are mutated genes, thus MAYBE giving you a higher chance of severe cancer, it's important to know that this is bleeding edge science and very fuzzy at the moment (this from a very long discussion with a genetic specialist regarding this test) - however, regardless of mutation, having breast cancer in your family history may give one more reason to be diligent about their treatment. Like @retireditguy, my mother passed from breast cancer.

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Profile picture for scottbeammeup @scottbeammeup

I would have still done radiation but would have skipped ADT and taken my chances. I was only on it for six months but now it's a full year later and I'm still having problems and side effects from my testosterone not returning. That's the single thing that makes me angry about the whole experience--I was given minimal information about ADT (you'll have tiredness and hot flashes is all I was told). I suppose part of it is my own fault for trusting my doctor without doing additional research on my own. I was a G7 4+3. In terms of PSA, radiation has knocked it down to .04 which I'm told is good.

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It’s going on 3 years since I had radiation and 3 shots of ADT. And I’m still having serious side effects from the ADT. All things I was never informed about. I have brain fog, low T, developed afib and bone density loss. But my psa is low. And while my libido was still there, recently it has tanked and all that is left is a mushroom cap. Even pissing has become a challenge, either sit down or physically grab and guide the stream, otherwise it’s all over myself. I have to see another doctor to see if I can go on testosterone to at least feel better. So much is not discussed or explained, and trying to find out, the questions are blown off. Yet, looking up side effects of ADT mention all the side effects. Before treatment, I had none of them, yet now I have to deal with them and try to find relief. The hardest part is trying to get “outsiders” to understand what I’m dealing with and how it affects me. I know that I certainly don’t feel like a man anymore. Eunuch anyone. Chemical castrastion certainly fits.

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Profile picture for survivor5280 @survivor5280

I think that's an important distinction that is often not talked about: breast cancer history. Breast cancer and prostate cancer are related in the BRCA1 and BRCA2 genes. While you can get a gene test to see if these are mutated genes, thus MAYBE giving you a higher chance of severe cancer, it's important to know that this is bleeding edge science and very fuzzy at the moment (this from a very long discussion with a genetic specialist regarding this test) - however, regardless of mutation, having breast cancer in your family history may give one more reason to be diligent about their treatment. Like @retireditguy, my mother passed from breast cancer.

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You make a great point about the gene analysis being essentially another data point but far from conclusive. I did get the gene testing and I was surprised that in my case it didn't show any genetic markers for breast/prostate cancer. But my 2 sisters died from it (although technically 1 died in 2020 from blood clots in the lungs caused from radiation therapy), my brother had aggressive prostate cancer in his late 40's (and 25 years later got bladder cancer probably from the radiation), and 2 of my 3 aunts on my Mom's side had breast cancer with 1 of them dying from it. So I strongly suspect there is something genetic there that just hasn't been identified by science yet. But who knows; it could just be bad luck. All that said, not a great family history which did influence my decision making in that I didn't want to assume I had the common slow growing kind of prostate cancer. It's an imperfect world and all we can do is make what we believe is the best decision at the time with the information we have. Best wishes.

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I chose radiation because PET indicated I had lymph node spread, and the surgeon said he wasn’t sure he could get both affected lymph nodes fue to my previous hernia surgery with mesh inserted. What I wish is that my PCP had agreed a year earlier for me to see a urologist. I might have prevented metastasis and just had radiation, avoiding hormone therapy which has given me the most/worse side effects. A friend in his 50s had an RP and his stars aligned perfectly: clear margins, no spread, all nerves spared so urinary incontinence and sexual function have recovered quickly. And no radiation or hormone therapy. That would not be typical for me in my 70s.

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I had both, my life with my wife has been down hill. The radiation seemed to hurt my hip replacement before and knee replacement. But my PSA is not detectiable. Now I have HCL so I have to do something about that.

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Profile picture for chebo1954 @chebo1954

We must face the fact that cancer is such a sneaky bastard that when is put in remission at location it will show back up in another location so we are charged with battling one at a time, but I believe that each episode must be battled with a furiosity that lets the bastard know that you refuse to back down!

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Yet, you take surgery out of the equation to ‘battle furiously’? Makes no sense to me, regardless of your feelings for surgeons…

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Welcome to the world where there are no clear answers for most of us. It would be so much easier if it was like a broken arm, where the fix is a cast. You have received all kinds of good feedback. My advice is to research your options, determine what makes sense for you at this point in your life, go forward with your decision, and never 2nd guess your choice. Anybody that chose surgery and then had recurrence/side effects likely feels he should have chosen radiation. And of course, the same rings true if you chose radiation and had recurrence. It is human nature to wonder about the road not taken, but nobody can tell you for sure if that other road would have been better. I chose neither the radiation or surgery route and went with Tulsa Pro. I did the research and determined this was the right choice for my 4+3. I went in knowing the risk of a new treatment, but was very confident in the extensive follow up process I would be in. I had my 1 year check today at Mayo Rochester and the Doctor told me I can consider myself cancer free for now, and get back to giving blood every 2 months.

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