Hello everyone, I am looking for your advice regarding the decision to proceed with prostate removal surgery.
I was diagnosed with stage 4 P/ca in 2021 at the age of 70, and at that time, I had a metastasis on my hip bone. Surgery to remove the prostate was not an option then, so I began receiving ADT injections every three months. I have not undergone radiation or chemotherapy. Now, four years later, recent scans indicate no metastases, the hip bone lesion has resolved, and can not be detected on the scans, my PSA level is at 0.08, all other blood tests are excellent and my prostate has reduced in size from 6/5.5/5 cm to 3/2.5/2 cm. My oncologist thinks my cancer is in remission and that now would be a suitable time for removal surgery. She warned that if I choose not to have the surgery, the cancer could potentially become active again. However, I feel great and have concerns about possible complications from the surgery. For those who have undergone this procedure, what was your experience? I am particularly worried about issues like bladder control loss and possible nerve damage. What would you do?
Thank you
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LuisJ
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The standard-of-care for oligometastatic men (like you), is prostate radiation. There is a clinical trial that may tell us if prostatectomy is as effective as prostate radiation for "debulking." For now, surgical prostate removal is experimental.
My only suggestion is to find out how many RPD she's done.... and her batting average regarding after effects. I assume she will do it robotically, mine was the old fashioned way back in 2002. Can't go by me cause in those days doctors didn't know what a robot was.....
But remember Luis, whatever you choose NEVER look back and say "shoulda, coulda or woulda (BTW always blame the wife).
I had RP and then shortly after found out I has a lesion on my spine. SOC would have been radiation but things didn’t turn out that way. Then received ADT and SBRT. How do I feel (no real facts here) about the RP? I am glad it is gone and not churning out stem cells or becoming more aggressive. As Tall Allen said, it will be determined if it will work to my advantage. My surgeon was top notch in a good hospital using robotics. Did it suck? Yes first week a lot. First month sort of with other annoying pains. I was very lucky in little urinary problems which is an exception. I know numerous other guys who had problems but they resolved pretty well with exercises etc. Sex life collapsed but hey I am 64. Most surgeons won’t do the surgery if radiations had been used in the prostate. So far, I would vote for having it removed but everyone is different. Maybe a second opinion at MSK, Dana Farber or Stanford? Good luck!!!!
Do your homework and don’t let anyone do surgery on you who has done less than 100 prostatectomies. Same if you are having the surgery done robotically. Brachytherapy (surrounding the prostate gland with radioactive seeds) is far less invasive. Many of my friends who have had this therapy swear this is the way to go. Hope that helps.
I’m thinking about what John said in his above comment “never look back”. I try hard to follow this principle, but regrettably in my case lately I am failing at this.
I had my prostate removed September 2022. I am definitely one of the lucky ones. No detectable PSA post op, no urinary incontinence at all.
But also a slow deterioration of my sense of self, of how I function as a sexual human being. A hollow depression that creeps up on me that I don’t share with anyone until now. I can’t even put it into words verbally.
I try really hard not to show it but I am pissed off with my decision, I find myself angry about it. I was advised I would need a turp before radiation to treat urinary hesitancy, retention and a slow stream. But my surgeon convinced me to kill two birds with one stone so to speak and just have the robotic surgery and it would be done with.
I have tried all that is available to gain back a semblance of an erection to no avail, apart from an implant. I’ve decided against this as financially I can’t even contemplate it. I have to live with this lack of function but boy I find it a life changer in so many ways.
Think long and hard about surgery, explore all options, make well researched informed decisions.
Aussieguy1 - I appreciate your candid thoughts and comments. So sorry to hear about the path your procedure placed you on.
One comment/question: You mentioned you have tried "...all that is available". Does that also include TriMix intracavernous penile injections? I've been told it has an extremely high rate of success.
Luis: Glad to know you are doing well. Remember, surgeons do surgery. That said, whether you do surgery or radiation, you're likely to have side effects, especially with regard to erectile function. Radiation is less likely to cause bladder leakage but in most men who have surgery, the bladder problems are temporary, especially if you begin doing pelvic floor therapy before surgery and stick with it afterwards. All the best to you!
I agree with Tall_Allen that generally if it has spread beyond the prostate, "the script" (standard of care) is generally NOT to remove the prostate and use the BRACHY (I've several oncologists). 70-year-old brother-in-law had prostate removed and took about a year to get back to confident bladder control.
My situation was unusual so don't take this literally. The surgery was successful but I had some unexplained clotting that required 3 trips to the ER in less than 24 hours to be recatherized, uncatherized, recatherized...
Main advice is, choose your ER wisely if something happens. It was at night and the A team was not there. After the final catheter was removed all was swell. Having a catheter is good in that in the immediate aftermath of surgery, when you're really sore, you don't have to get out of bed to pee. OTOH, it's also very strange.
I saw no reason to have a cancer-ridden organ in my body anymore and MD Anderson offered me a chance to participate in a clinical trial to track results from having prostate removed or radiation; I chose removal. DM me for more info.
I had RP in December 2021. There was evidence of spread to lymph nodes on PSMA PET scan. Surgeon seemed confident he could dissect those nodes. I went for the home run and had the surgery and extended lymph node dissection. PSA never went to zero, as we had hoped.
I wound up with 33 sessions of salvage radiation and 2 years of Lupron and Abi + Pred. In some ways, I feel lucky. I am continent. I am in remission. However, T has yet to return to normal and I have substantial shrinkage and ED. Low libido too with my low T.
In hindsight and with info I have learned here, it seems that RP after lymph node spread was an unrealistic try. I think I would have just gone straight to radiation and would likely be in a better place today.
I don't live with regrets though. I am looking forward to a long and happy life and pray for same for all of us.
well I chose radiation.. Just finished and no real side effect. This is combined with hormone shots every 3 months and Chem Chemo pills every day for the next 2 years. IMO this was a better option for me.
I agree with Tall_Alan, radiation is the best way to go. SBRT (5 sessions) is what I did, and I have no regrets.
Also, if you decide to do ADT, check out the PATCH study, which showed that you can replace Lupron (etc.) ADT with transdermal Estradiol patches (or gels), and achieve the same level of effectiveness and safety as Lupron (etc.) ADT, but much less bad side effects.
I had an RP at age 60, and I'm 81 now. The surgery was a success; however, I lost much of my sex drive, no more ejaculation, and a 'minor' amount of incontinence. Brachytherapy wasn't available back then, which I would have preferred over surgery. My best to you whatever you choose to do,
My experience is in my Bio. If other guys go beyond sharing their own personal experience and try to tell you what to do with your body, they don’t know your situation as well as your medical oncologist. Every case is different.
My original MO at MSKCC, Howard Scher was (I believe) a world leader in the field when he began treating me almost 13 yrs ago (he was promoted and stopped seeing patients about 8 yrs ago). He explained in detail the SOC at that time (and apparently still now) that once the cancer has spread to the bones (and/or perhaps other areas) that surgery was not called for. HOWEVER, he also gave me a theory on why surgery MIGHT possibly be helpful even though proof was lacking. I was to be only his 13th patient at the time who had the surgery and elected to use a leader in nerve sparing surgery and a very well respected surgeon with decades of experience in the NON- ROBOTIC procedure. And- Dr. Scher had only suggested the surgery for me and the other 12 others, because we were otherwise young (I was 54) and healthy and could tolerate it well. I have no idea whether the surgery benefitted me at all. I am still on ADT doublet therapy (as SOC back then hadn't progressed yet to triplet therapy). The side effects I suffered were and have been extremely minor. Yes- I believe I wore a pad for very urine leakage for a few weeks at most. Yes, on rare occasions (less than 1x monthly, a big belly laugh or cough MIGHT result in a eakage so small, I don't even need to change my underware. I still get an erection (smaller and not as stiff as before) but the ADT has destroyed my libido anyway so that's not really a loss. Taking everything into account, including one very difficult night in the hospital followed by a week of watching TV on the couch, I WOULD go thru the procedure again. I should not that during the surgery, another surgeon went into my "stomach area" and removed about 35 lymph nodes, one of which tested dirty for PC, so my recovery was more difficult than most as I have a 12" inch scar....I take no position on whether you should get surgery or not but suggest you get someone VERY experienced and highly rated. In NYC where I live, you can find surgeons who have done THOUSANDS of these surgeries, not just 100s. The last thing I will say is according to what Tall_Allen posted, there appears to be a clinical trial going on to see if surgery is fruitful (although I don't know the details of that study) This leads me to conclude, at least in the tyoe of patients being studied, that we do not have a final answer on the matter. Good luck with whatever you decide to do.
Wow, such a tough question and so many unique stories. Here's mine. I opted for surgery before we knew about spread. Timing for me was tough (2021) PSMA was not really available. I had bone scan that picked something up on hip, but follow up MRI on this area did not show anything. Because my biopsy showed widespread cancer in the prostate (GG 4/4, 10 of 12 cores, seminal vesicles, perennial invasion), getting the organ out seemed like the best option. Surgery SIs were not terrible, no LT urinary issues, but no more errections. Also, found one positive out of 3 lymph nodes. Post surgery PSA was still 3, so I had Axumin CT, which showed suspected spot on left hip (to risky to biopsy). I went aggressive with triplet therapy followed by salvage IMRT (SBRT was not yet widely used yet) to pelvis and prostate bed. Immediate PSA response to <0.1 and been there ever since. Stayed on ADT/Abi/Pred for 2 years and I've been off therapy for 1.5 years now. So far so good.
With advances in radiation technology and techniques I may have opted for radiation, especially if we had known about the suspected bone Met, but second-guessing does no good, and I'm happy that I did the most I could do to beat this thing. We'll see...quarterly PSA check coming up this month.
If the cancer has spread beyond the capsule of the prostate, the consensus is radiation coupled with ADT is the way to go.
Should you go with a prostatectomy, be sure you are dealing with a very experienced surgeon. Understand that, as far as sexual performance, you will never be the same.
Please note that this is my husband's experience only. From the time the catheter was removed after having his prostate removed in 2018, robotic surgery, I might add, he has been incontinent, constant "leaking" as he calls it. It has been a nightmare for him, not to mention the cost of incontinence supplies. He was not interested in any of the "unconventional" treatments. Thanks for this platform to share. My best to everyone.
I don’t advise but I’ll tell you my experience. I opted for RP because my low psa and MRI suggested it might be contained. (It wasn’t. Had to follow up with RT and HT. ) My surgeon did it robotically. He bragged that all his guys regained continence. I don’t know if that was true but it was for me. Took about 2 months. The RT has been worse. Radiation cystitis, bleeding, retention, cystoscopies, fulguration, catheters. A miserable 2 years ton say the least and I still have occasional bleeding. I also have mild radiation proctitis. My RT was 4 years ago. Comparing side effects, the RP was a walk in the park however I did leave the hospital with a shiny new inguinal hernia. As TA points out, radiation is soc if the genie is out of the bottle. I guess time will tell if the surgery was any benefit to me but conventional wisdom suggests it probably wasn’t. Having said that, I wanted the factory out of me and I don’t regret my decision. If I hadn’t needed RT afterwards, I’d be a happy camper today. It just didn’t work out for me. Good luck with whatever you decide.
Luis. I have always been an advocate for focussed ration (Lute-177 if you can afford it and IMRT). Diagnosed 5 years ago, now on ADT. Still running 3 days a week and long distanced cycling. I've had no invasive surgery and want to keep it that way.
Thanks to all for sharing. As I read the inputs two things came to mind. First many mentioned the desire to “get the cancer out” as justification for surgery. My buddy felt just like that and elected surgery. He also was forced to do additional radiation and ADT for a year at Mayo.
Just a reminder modern radiation does kill the cancer cells in the majority of cases better than initial surgery. Second, age, physical condition and SEs needs to be considered in the decision.
Now for my experience. I chose radiation at 78 and in superb physical health. My RO was fresh out of residency. Since I am the primary caregiver for a handicapped wife my initial approach was SBRT with 5 sessions. She spent time with me to explain an option that was not SOC but she felt I was an excellent candidate for.
She proposed only 25 sessions of IMRT, 6 months of ADT which would also include whole pelvic radiation. This was to kill microscopic cancer cells outside the prostrate which she felt was an extremely high probability based on my biopsy results.
I left that initial session and called my GP who was a former Navy flight surgeon. As a former military pilot we shared a common bond that cut out the BS. Her words rang true. “That girl has her shit together. So do what she recommended.”
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