Prostatectomy Question? Side effects outweigh benefits?

Posted by fuzzy123 @fuzzy123, Jul 30, 2023

My doctors told me they no longer due Prostatectomies as the side effects far outweigh the benefits !! But I see many of you are ??? And some are still getting them done at the Mayo Clinic and other Medical Centers !!!
So who is right and who is wrong here ???
I had 44 external beam radiation treatments!!

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Most of the men who chose radical prostatectomy that I've met or read about say the same thing " I just wanted it out". If you watch Dr Mark Scholz videos on radiation vs. surgery he will tell you he personally believe radiation is as effective as surgery and does not recommend surgery very often.

I chose radiation + ADT and the side effects have been minimal. Both treatments typically result in dry ejaculations forever but there is a much higher chance of impotence and incontinence with surgery vs. radiation

Decide what is best for you and find the best surgeon or RO to provide the treatment. I recommend using a multi-discipline university "center of excellence" vs. private MDs

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Profile picture for spino @spino

Perhaps people are too polite to say it, but any MD who says "we don't do prostatectomies anymore" is either misinformed, lying, or marketing (and perhaps more than one of those three?!) The MDs I'm looking for are able to talk about nuance, ambiguity, and relative values. They can discuss situations where certain treatment plans are preferable and situations where they are less desirable. They have experience as well as familiarity with research following clients who have had different presenting profiles and treatment plans over extended periods of time, including those for whom initial treatments proved inadequate and/or undesirable. They know not only their own opinions but those of their colleagues in the field, whom they respect. They have had patients die and grieved the loss. They have personally wrestled with tradeoffs between quality of life and length of life for people they care about, if not themselves. Those are the MDs I'm looking for, and they will generally be happy to provide the treatments they are best qualified to provide and familiar with colleagues who can provide the treatments they are not best qualified to provide. Any urologist of excellence, given the shortage in the field, has plenty of work and should not need to push people toward their own specialties. And an MD who is ethical in the consultation room is more likely to be ethical in the operating room, the radiology lab, and the chemo protocols, not to mention the billing protocols.

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@spino

I agree 100%. I was shocked to read it since RP was and still is a "gold standard" for PC . That doctor is blatantly lying to his patient - unbelievable ...

As somebody already mentioned before, no scan in the world can see what can be seen during surgery and also after gland is out and examined in detail under the microscope.

If my husband chose radiation he would have been treated for 4+3 PC while in reality he had 4+5 gleason that was discovered after RP. Also, if patient has cribriform glands or IDC pathology , those features sometimes evade radiation treatment. After radiation it is very, VERY hard to remove a gland and very few surgeons know or want to do it, and one can not irradiate the same spot twice !
My husband wanted to have option of RT if he ever has BCR and we are very happy that he chose RP as a first line of defense.

BTW - both RO and surgeon suggested RP as a best approach for my husband's case.

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Profile picture for surftohealth88 @surftohealth88

@spino

I agree 100%. I was shocked to read it since RP was and still is a "gold standard" for PC . That doctor is blatantly lying to his patient - unbelievable ...

As somebody already mentioned before, no scan in the world can see what can be seen during surgery and also after gland is out and examined in detail under the microscope.

If my husband chose radiation he would have been treated for 4+3 PC while in reality he had 4+5 gleason that was discovered after RP. Also, if patient has cribriform glands or IDC pathology , those features sometimes evade radiation treatment. After radiation it is very, VERY hard to remove a gland and very few surgeons know or want to do it, and one can not irradiate the same spot twice !
My husband wanted to have option of RT if he ever has BCR and we are very happy that he chose RP as a first line of defense.

BTW - both RO and surgeon suggested RP as a best approach for my husband's case.

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@surftohealth88 I would not want to accuse a professional of lying, but I have certainly encountered professionals who had a very high level of confidence in their own opinions.
I'm glad that the professionals with whom you consulted agreed, as that always makes the decision easier--unless you personally disagree.
When I had to make my decision, I found it hard to accept the direction I was receiving, even though I had no expertise to disagree.
[Wait a minute--I'm talking about when my PSA first came back at 10.8. My primary care MD agreed to wait and retest in a month. I don't think that was for him!]

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I am 55 and in otherwise good health with Gleason 4+3 and I will be undergoing retropubic robotic assisted radical prostatectomy in 2 weeks at MD Anderson. My decision was based on advice from both the surgeon and the radiation oncologist at MDA who BOTH recommended we go this route. It is a toss up over 5 and 10 years and if I was older, they may have recommended radiation, but the decision for me was that if it does come back in 10 or even 20 years, we still have radiation 'in the back pocket' should it reappear. This is a very personal decision and neither was right or wrong, but I am hopeful that the incontinence and ED are temporary and radiation can have long-term side effects as well. My decision was based on advice of doctors - including second opinions, talking with people like me that have gone through this, this forum and a book called "Surviving Prostate Cancer" by Dr. Patrick Walsh which I highly recommend. Good luck and God bless.

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Profile picture for rlpostrp @rlpostrp

My advice - if you have prostate cancer...find the highest quality, most skilled and well-reviewed urologist to do a single-incision DaVinci Robotic Radical Prostatectomy. Like my doctor told me when I asked about "active surveillance": you"have" prostate cancer and it is not going away...there is no need to watch and wait for two years, it is only going to get worse, so...I am taking your prostate...now." That said...while every surgery has its recovery issues, I still do wonder if I should have waited: my father lived to 99 years 10 months "with" prostate cancer and no treatment. But, he suffered greatly with horrible UTI's and sepsis his last five years. His doctor said he was now too old for the surgery, with which I agreed. My maternal grandfather lived to 96 "with" prostate cancer. It was diagnosed in the late 1970's and he lived until 1992 - roughly 15 years without many issues. He dies of Alzheimer's. He went for a monthly injection right into the prostate (ouch). My maternal uncle lived to within weeks of his 87th birthday and died of a massive cerebral aneurysm/stroke. He had his prostate removed about 10-12 years prior. They each had their issues, but none of them had my issues.
I just had my 6-month check up - PSA still < 0.1 ng/ml. But with "surgical margins" and cancerous tissue left in me, plus my diagnostic category/grade as a pT3b, my cancer has a very high probability of returning within five years. Had I left it intact and just done other treatments, I would at least be 100% continent and able to perform sexually. While I have regained 98% urinary continence, I have not had one erection in 6 months which is extremely depressing. You haven't shared your Gleason Score, your Decipher Test score, or the descriptives in your biopsy report, but I can tell you this: the Gleason Score doesn't tell you anything until your prostate is removed and the surgical pathology report is given to you. THAT is the tell-all report. My overly confident "we caught it early" urologist (Gleason 3 + 4 = 7 with only 6-10% of cells at "4" - so very close to still being a Gleason 6), was dumbfounded when my surgical pathology report came back with lots of other issues that threw me into the pT3b category. Yes...the post-surgical complications are unpleasant, but I read here that a lot of men do not suffer them at all, or for less time (we're ALL different). I still say get the radical prostatectomy...then you know the cancer is gone ("if" there are no "surgical margins" in the pathology report, which means your urologist left cancerous tissue inside of you, like mine did, which only happens 10-20% of the time). Good luck.

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@rlpostrp thanks for you explanation. honestly until your description i never looked closely at my pathology report. i spoke with my doc who told me it couldn't have gone better (DaVinci) and that the pathology showed no margins and tumor less than 10%. after viewing the report my staging was :
PATHOLOGIC STAGE CLASSIFICATION (pTNM, AJCC 8th Edition):
pT Category: pT2: Organ confined
pN Category: pN0: No positive region
al nodes
pM Category: Not applicable - pM cannot be determined from submitted
specimen(s)

Which is interesting because they staged me at 3 before I went on my trial drugs (pre-surgery) so I assume that staging was done from my MRI, PSMA Pet scan, and my biopsy which was gleason 9. the trial drugs (lupron and olaparib) greatly reduced my cancer which was seen on the pathology report (vs the mri and pet scans).

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