I never did, though I was diagnosed in 2018. I did have a TURP, however, which was completely ineffective (the goal was freeing urination; didn't work). It occurred to me that most of the posters here probably had prostatectomies, which would make them far more concerned about rises in PSA. My PSA WAS off the charts three months ago, but has been brought down to 9 after three months of Casodex. My oncologist said that if my PSA was below 30, she'd hold off on the Lupron or equivalent. She didn't believe me when I told her my testosterone is way up on Casodex (despite that being all over the internet). My testosterone was 950. I guessed my PSA would be thirty or less. I won both of our bets! 
Percentage of people here who've had ... - Advanced Prostate...
Percentage of people here who've had Prostatectomies?
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Jsbach1953
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I did not have. Of course your statistics will be skewed based on who responds to your query.
Hello,
Before deciding on whether to have a prostatectomy (surgery) or brachytherapy (implanting radioactive seeds) do your homework. These are the two main options but there are others. Many surgeons and urologists will tell you that if the surgery does not work you can always fall back on brachytherapy. However, if you have brachytherapy first, then surgery is not possible because the prostate gland is "cooked" (like porridge). That is not quite true. Salvage surgery is possible. Moreover, if the brachytherapy procedure is done right, then follow-up surgery is not usually necessary. Also there are far less possibilities of nasty side effects with brachytherapy (i.e. incontinence and impotence).
The big factor, whatever option you choose, is the skill of the person doing it. Ask how many times your selected medical practitioner has done this procedure before deciding on any option. If the answer is less than a dozen stay away. The same rule applies if you opt for robotic surgery. The Da Vinci robot is only as good as the person operating the controls. Without being too cynical, medical staff get paid far more for prostatectomies than for brachytherapy. If their hospital or clinic has bought a Da Vinci robot then obviously they are going to promote that option. For the record, I have had neither procedure. My PCa had metastasized to my bones before I became aware of it. Many of my friends, however, went with brachytherapy.
Finally, Casodex (bi-calutamide) only works for a short period. After a while it no longer suppresses but rather feeds the cancer. Casodex is meant to control the testosterone flare associated with ADT drugs. In my humble opinion, with a PSA of over 30 and a high testosterone level you need to move to an ADT drug, or one of the options mentioned above, sooner rather than later. Hope that helps!
Your post is why we log into HealthUNLOCKED.
Thank you!!!
Good Luck, Good Health and Good Humor.
j-o-h-n
I probably should do that, John.
In a lot of cases, salvage surgery is not possible. Depends on how complicated the case is. In my Dad s case 3 surgeons were consulted .. each had more than 1000 under their belt and told us salvage won't be possible given the complexity of the case.
I had RP and also I am very sensitive to Casodex. Check my bio for more.
I don’t think anyone has done such a survey, but it seems more people on this particular site have done radiation than RP. And you will find a “confirmation bias” in most opinions - eg if I did it, I must have made the right choice. The important thing is not to get too hung up on what others did. Everyone is different. Make your own decision based on your individual circumstances and diagnosis.
Well, I suspect there's a pre-selection bias here in the sense that for the most part the posters are still alive and kicking! So we're hearing from the people who had more or less positive responses to treatment.
I was already high-volume metastatic at diagnosis so I didn't have either a prostatectomy or radiation. I did have a TURP and it provided amazing relief.
I had one, too. Sadly, it failed within three weeks.
I never had the prostatectomy as my PC had metastasised to the bones prior to my diagnosis. I had a TURP almost 2 years ago which provided a lot of relief, and been on Lupron, Abi & Prednisone for 18 months now. Side effects are crap, but my PSA is currently 0.089.
Congrats. Almost the same comment for me except I have been on Abiraterone(generic Zytiga and Prednisone for 10 YEARS and my PSA remains undetectable at<.006 . Keep the faith Brother, many many more years to come.
I'm glad the TURP worked for you, anyway. Mine certainly didn't.
I had a green light Laser Prostatectomy which was very successful in increasing urine flow. PSA nadir of 9 after Chemotherapy. Relatively stable < 15 if I’m on continuous ADT (Eligard). Not symptomatic.
I would've liked to try that, but unless you're willing to fly somewhere, you're stuck with whatever the locals do. Mine (in South Dakota, Sioux Falls) didn't offer that or any other of the "alternative" prostate-removal options.
I had a RP in June 2021. Small positive margin. I had no follow up treatments. I am saving them for later, if needed, since you really only get one shot at them. There is almost no curing with a Gleason 9. I am just now showing a PSA of .1 and considering options. Probably Proton therapy if the return on cancer is isolated. Waiting on .2+ PSA for PSMA scans to determine location.
"... diagnosed in 2018... PSA WAS off the charts three months ago, but has been brought down to 9 after three months of Casodex. My oncologist said that if my PSA was below 30, she'd hold off on the Lupron or equivalent..."
So you had no treatment for 6 years, until very recently, and then only Casodex monotherapy (which blocks the effects of testosterone but not production)? No prostatectomy or radiation or ADT?
That's right. And until about three months ago, I read the posts here with a slight sense of righteousness since I was feeling good without the massive onslaught of drugs, radiation, etc. Well, that "righteousness" is pretty much gone now. Still, I do find it interesting that I have elevated levels of testosterone. Still, my PSA went from <500 (the doc thought it was closer to 1000, but they were unable to measure it rigorously enough to be sure) to 9 As Tall Allen pointed out, testosterone per se doesn't cause cancer (I think that's pretty self-evident) -. Still, ADT does work to combat cancer by depriving it of nutrition....for a while, anyway. My best thought is to strike with something while my cancer's down. To me, that means "fringe" treatments like Fenbenzadole ivermectin, turmeric, liposomic Vit C, and so on. Also, NAC and NAD+. However, I understand the more conventional approach (I think espoused by TA) that some form of cleanup operation via radiation, surgery, or even a stint on chemotherapy. I'm looking for a cure, and I know ADT alone won't offer that (for most if not nearly all of us).
"... some form of cleanup operation via radiation, surgery, or even a stint on chemotherapy."
It would not be clean up or salvage if the prostate has not been treated before. I think you would have a PSMA-PET scan to see if the cancer is still confined to the prostate. That information would guide treatment. In any case , I would want to start systemic therapy now, doublet or triplet. I regret that I started it too late to avoid mets. At 82, I am on doublet Orgovyx and Abiraterone, and it is not bad at all.
I’d suggest you get a second opinion if your PSA is over 30.
Had RP, 4 years later Radiation and Eligard for 4 months. Psa rising again but slowly so let's see.
I did not. The images convinced us that the cancer was too close to the edge of the prostate and risked having some cells escape. Opted for radiation. In the end, it did not matter because some cells escaped before treatment started. I was metastatic two years later.
I'm kinda convinced the biopsies are the culprit in cells escaping into the prostate bed. But SOC says you have to get one. Wish someone could come up with a better way to verify PC so we wouldn't be forced into that box.
I never had a "needle biopsy". I only learned about the PC after my TURP. Though my urologist strongly expected they'd find it was cancerous.
Interesting....
I had the same concern regarding the biopsy producing fugitive cancer cells, but the urologist claimed that that doesn't happen.
Not sure how that can be proved either way.
I read a book on the subject about 15 years ago that had microscopic pictures of the puncture hole and abnormal cell growth going out of the prostate. It doesn't take a rocket scientist to know, and I am one, that blood seeping from the puncture into the prostate bed could lead to escaped PC cells. I know doctors say no it can't happen but submit the answer is not zero %. Best course of action is to limit time as much as possible from biopsy to removal. IMHO
Regardless of the doctors' denials, it is reasonable to suspect that the numerous cores into the prostate during a biopsy would release some of the cells from the sample as well as from the cavity of the core in the bleeding into the abdominal cavity that ensues.
I am not sure my case will be of any help to you, but I was DX will metastatic disease but had my prostate removed with the understanding that doing so would likely have no benefit. I was only my MO’s 13th patient treated this way. In retrospect, I am under the impression that the surgery provided no benefit to me but fortunately I didn’t suffer any long term side effects from having the surgery performed.
An RP would presumably offer consider relief in my urination. I'll talk to my doctor about that, but I'm guessing she'll counsel me not to do it.
How far out are you in years post RP?
Know what happens when a Urologist takes Viagra? They grow taller.
Had a Radical Prostatectomy 14 plus years ago followed by Salvage Radiation. I'm still in the game and think "killing the host " was the right call.
yeah i always come back to this. Sure the cancer has escaped/spread from the prostate but why not remove it to stop further output from the prostate?
The official account is pretty unvarying: once the cancer has escaped, there's no point in removing the prostate. I'm not sure if they're factoring in the dangers and side-effects of RP - they're quite real and substantial - in deciding not to remove the prostate. I would think if removing it was fairly easy and didn't have negative side-effects, there would be no reason not to do it.
Yeah fair points, but once spread has occurred isn't the prostate still pumping out cancer cells even though with adt our test is surpressed
I'd say the prostate continues to pump out cancer. However, the pluses and negatives need to be weighed. So far, the Official Medical Narrative says the negatives outweigh the positives. I'm not sure of that argument, though I can imagine it. I'll asked my oncologist about it on my next visit. She has an MD and a PHD in molecular biology, so you'd think she'd know about that
Kill the Host! agree.
It's a debate forsure
Dr. went straight for ADT as "the cat is out of the bag" at diagnosis. No surgery or radiation. Chemo didn't work.
Since I was diagnosed with distant bone mets, I never had an RP.
That is SOC.
Assuming you have advanced PC. Your inquiry will probably reveal almost no one with PCa had proctectomies, as it is usually advised no survival benefit at this pointe. That's what they told me in 2012, as it had already spread to 5 mets on bones.
Also you dont want high testosterone, (most likely to feed the cancer) you want low T. Casodex for me with an initial PSA of 71 was not very effective. Lupron brought the PSA down to 4.5, and Zytiga brought it down to undetectable < .008 for the past 10 years now. Best to you, keep the Faith Brother...and maybe stop with the betting with your Doc. !! Unless you are a true gambler like the Kenny Rodgers song!(lol )
You might want to find a second opinion from another Onc Doc specialist to be on the safe side.
All the best,keep us posted on your journey
Wings
Well, if you have one hundred oncologists and urologists in one room, you probably will get 100 different opinions. Everyone seems to have their own perspective. My default is Less is More. I guess my oncologist agrees...
What an impressive run on Zytiga! Awesome!
I had a RP in 2020, then Abiraterone, Lupron, and EBRT salvage radiation. The supposition was that my PC was confined to the prostate, as was indicated by an MRI. After surgery, it was discovered the PC had spread to the lymph nodes. Today, I would have had a PSMA scan before surgery and this would have been clear. Of course, given what I know today, I would have chosen RT and not a RP.
If I could go back in time to 2018, I think I would've chosen a RP. But you never know. It's kind of adding insult to injury if you have an RP and still have cancer. But presumably less for your body to fight? In theory, it seems so, but in practice doctors pretty uniformly say removing a prostate is pointless if you have mets.
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