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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@jm23

Hello all, I was doing research to seek information on what others have done to evaluate this important decision. I was just recently diagnosed with a very rare type of aggressive prostate cancer with mostly gleason 8’s & 9’s and a PSA of 3.5 which baffled the doctors. I’ve been doing regular blood tests and at no point had it gone up or increased.

Bone scan and PETscan came back clean with no signs of spreading. Trying to evaluate my path and like others here have stated, due to the option to have radiation after surgery I am leaning towards surgery. It’s tough to decide what option is best weighing the side effects, but having radiation as a backup seems like a good move as the Surgeon said they will not remove the prostate if we choose the radiation path.

My concern is, if the cancer has spread and so far is undetected why don’t the surgeons offer radiation in addition to surgery for the surrounding tissue now instead of waiting to see where it shows up? Also, since my PSA levels and never been an indicator I may need to do a PETscan or Bone Scan to detect it in the future.

Also, with so much cancer in the prostate can any of the cells escape into the body and land elsewhere?

Thanks in advance. I appreciate reading everyone’s experience here.

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(Cut off; continuing)
undetectable (less than .1)
Post-op pathology confirmed Gleason 9, together with extra prostatic extension (EPE), meaning some cancer cells had gotten out of the prostate, but were found within the surgical boundary.
Proceeded with IMRT salvage radiation treatment to the entire pelvic region (WPRT) including pelvic lymph nodes, together with a short course of ADT , 4 mos Orgovyx.
Looking forward to a good PSA test in November.
Your questions: My lay person understanding is that the current trend is to not radiate immediately following surgery, wait for first PSA reading and then evaluate the status. Also, giving radiation a few months after surgery allows the pelvic region to recover first. It is believed that biochemical recurrence BCR) such as mine indicates residual cancer cells in the pelvic region. My PSMA PET scans did not identify cancer, so the pelvic region is the likely location for cancer cells that escaped the prostate.
Again, I would choose the same path at age 72, now 73.
Best wishes to you and everyone suffering from cancer.

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My husband (68 y/o) had RALP on June 23, 2023, Mayo Rochester, so about 7 weeks post surgery. His Gleason was 3+4, PSA's never that high (under 7) but the second biopsy was positive for cancer in 1 core of 15 samples and showed cribriform gland present, meaning tendency toward aggressive. A PET scan confirmed the prostate cancer and also "lit up" on 3 lymphnodes in the pelvis. Due to this the medical and surgical teams in AZ said 5.5 weeks proton beam therapy with 2-3 years ADT was his best option. He hated the idea of prolonged hormone treatment. We opted for second opinion with Mayo Rochester surgeon. So glad we went that route. Were told the scanners are so sophisticated they can get some false positives. My husband's cancer was contained in the prostate, surgical margins clear and 30 lymphnodes extracted were all clear. Post surgery he had minimal incontinence, what I'd describe as dribble when coughing. He continues to wear a thin pad for assurance. Do the kegels! For years he has done stretching exercises for back issues and his core/pelvic strength is pretty good. Erectile function coming back - working on that! Highly recommend to find a surgeon who does Nerve Sparing procedure. Very, very important in mitigating the potential side effects. And find a surgeon who does prostatectomy all the time, they will be most skilled, knowledgeable and confident. Best wishes to all you guys, God bless you all.

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@hammer101

I am always skeptical of broad statements around medical procedures/advice. Each person is an individual, with the freedom to make the decision that meets his goals and life expectations.
As I always state, I believe the medical tools available today are fantastic and provide doctors with a lot of data to make their recommendations. However, they are not perfect and limited in their efficacy. For example - A quick search will show several studies around Gleason Score accuracy when compared to final radical prostatectomy pathology outcomes. Overall, correlation studies look to show that Gleason Score is approximately 55% - 60%, depending on Gleason Score. Same thing with biopsies, excellent tool/process, but not perfect. The biopsy does a great job confirming if there is cancer, but many studies show that biopsy-based Gleason Score rankings are not that accurate. Below are a few statements from the US NIH:
The most common Gleason score by needle biopsy and prostatectomy was five. 37.2% of all patients had no change in score assignment, while 12.7% were 'over-graded' and 50.1% 'under-graded' by needle biopsy.

Of 241 cases 45 (18.7%) showed a significant change in grade from Gleason score 6 or less to Gleason score 7 or greater (Gleason score 7 in 41 cases, Gleason score 8 in 4 cases). Of 45 (53.5%) cases 24 that showed progression did so within 24 months of diagnosis.
Within the first 3 years, our data suggest that in most cases tumor grade did not evolve but rather that the higher grade component was not initially sampled.

Overall lay-man's recommendation - Take all the available information into account and make the best decision that aligns with your life expectations. Try to ignore the "this is the best option" and "why would you ever do that procedure" comments.

Best of luck and have a great weekend,

Jim

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Jim:
To your point, biopsy results are an interpretation, a reading and impression, of the radiologist as to the nature of the cancer cells.
At Hershey Medical Center, a Urological Surgeon at this teaching institution performed the fusion guided 18 core biopsy and Pathology reported one Gleason 9 together with G 8s. Johns Hopkins University, a recognized center of excellence,
reviewed the biopsy material and reduced the one core reading of 9 to a 7. Postop Pathology at John's Hopkins found, or reconfirmed, Gleason 9 from my surgical material.
Also, the Pre-biopsy MRI identified a suspected lesion near the capsule wall, but not extending or extruding beyond it. As above, post up pathology identified EPE.
The various tests, and the science behind them, are amazing.
However, they are not a perfect predictor of what cancer will be found and how each patient will proceed.
Best to all.

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I'm 73 had RALRP July 18 2023 with a surgeon that has done 250 of them, nerve sparing, I consider my surgery a big success. Soar abs for a few days but no problems. Catheter for 7 days, Incontinence considered moderate, very little urine leakage while lying down, siting or going for my power walks. When I get up from siting or lying down I have to maintain a keagel until I reach the toilet, some leakage. Overall, better every day. Did my homework before the surgery, Keagles for 6 months and pelvic floor exercises for 2 months before. My APRN says I'm 2 months ahead of schedule. Also cut my liquid consumption down to 50 ounces a day. ED will improve with time and Cialis.

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@ozelli

Would you recommend your path for other future readers? Be honest.

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Honestly: 100% I would choose surgery again. No problem with continence.
Right choice for me. And I believe that Prostatectomy, particularly at lower Gleason scores, offers an excellent chance for a long term solution.
Clearly, Radiation and ADT the right choice for others.
Best to all.

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@michaelcharles

I chose RP for G 9 & 8s at a center of excellence for a chance at a long lasting "cure".
And I would do it again.
Surgery went very well; clean margins, lymph nodes and seminal vesicles. Continence excellent; ED a work in progress, and coming back.
1st 90 day postop PSA was .19 (and not the goal, which is

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Looks like the last part of your post was cut off after your 90 day post op. Sounds like the continence concern went well for you luckily which is a big concern so that’s great to hear. I read that many men take an average of 4-5 months or so with some regaining continence sooner, but I suppose it depends on your age, overall health and issues at the time of surgery - everyone has their own set of circumstances.

As I have recently just found out that I have PC, it takes a while to get over the disbelief and try to educate yourself on options available, as well as becoming familiar with what to expect moving forward with whatever path you choose. Each path (Radiation Treatment or RP) has its own set of side effects so it’s important to weigh them out and make sure you understand what you will be dealing with once your choice has been made.

Personally leaning towards RP myself as it seems to leave the radiation option open as a backup. I was offered to take part in a clinical trial at City Of Hope if I choose the radiation path, they take my genetic information and evaluate my chances of the cancer metastasizing and if the chance is high they add an additional drug that keeps the cancer from metastasizing if I understand it correctly and if it has and was undetected it slows it down by a significant percentage.

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@michaelcharles

(Cut off; continuing)
undetectable (less than .1)
Post-op pathology confirmed Gleason 9, together with extra prostatic extension (EPE), meaning some cancer cells had gotten out of the prostate, but were found within the surgical boundary.
Proceeded with IMRT salvage radiation treatment to the entire pelvic region (WPRT) including pelvic lymph nodes, together with a short course of ADT , 4 mos Orgovyx.
Looking forward to a good PSA test in November.
Your questions: My lay person understanding is that the current trend is to not radiate immediately following surgery, wait for first PSA reading and then evaluate the status. Also, giving radiation a few months after surgery allows the pelvic region to recover first. It is believed that biochemical recurrence BCR) such as mine indicates residual cancer cells in the pelvic region. My PSMA PET scans did not identify cancer, so the pelvic region is the likely location for cancer cells that escaped the prostate.
Again, I would choose the same path at age 72, now 73.
Best wishes to you and everyone suffering from cancer.

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Thank you for your in-depth reply Michael, this is what I have been asking my surgeon but he says they don’t radiate after surgery. I just turned 56 by the way, so perhaps I may respond better if everything goes well with surgery but I feel young to have this happen. My feeling was that the treatment should be different based on my rare situation so I will consider my options and get a second opinion.

Wishing you all the best on your next follow up in November! I really appreciate your reply so thank you!

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@jm23

Thank you for your in-depth reply Michael, this is what I have been asking my surgeon but he says they don’t radiate after surgery. I just turned 56 by the way, so perhaps I may respond better if everything goes well with surgery but I feel young to have this happen. My feeling was that the treatment should be different based on my rare situation so I will consider my options and get a second opinion.

Wishing you all the best on your next follow up in November! I really appreciate your reply so thank you!

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"Yes, yes and yes" to a PCa diagnosis being overwhelming and challenging.
Many men, including me, have benefited from Patrick Walsh, Md's excellent book "Surviving Prostate Cancer" (Note: 2018 4th edition and some treatment protocols have evolved).
Also the Prostate Cancer Foundation (pcf.org) has a Patient Guide that is free as either a download or in hard copy.
I felt that surgery gave me the best chance for the best cure.
In general, if radiation is your primary therapy, then surgery thereafter is more challenging due to the effects of radiation upon the prostate and surrounding tissue, with greater risk of adverse continence and erectlie function consequences.
Sounds as if the clinical trial would add one or more ADT (androgen deprivation therapy) agents depending upon your specific condition.
I am not able to comment regarding your "rare situation". Perhaps a 2d opinion from Johns Hopkins or Mayo might be instructive?
Best wishes in making your choice and for a successful treatment.
Best, Michael

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I am in agreement with michaelcharles, would definitely go with a radical prostatectomy again. For my circumstances (Gleason Score of 7, age 56, healthy, active, retired and praying for 30 years cancer free), this procedure offered me exactly what I was looking for. However, I am a just one individual with unique circumstances/goals. Others may find the exact same peace of mind and happiness with other procedures - There truly is no generic treatment plan for PC.

Best of luck and keep charging forward...

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@ozelli

Well of course it could go from Gleason 6 to a tad higher but it is not common.

Your ability to live 20 years from diagnosis of Gleason 6 is pretty darn good (provided you don’t drop dead from a heart attack of course).

Much, much better to wait than do any life changing treatment if you have a Gleason 6.

Or at least, that is what the research leads one to believe.

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From my perspective and taking the totality of my life into account (56, healthy, active, desire many cancer-free years), I would have to respectively disagree with letting a known cancer continue growing within my body until a doctor "thinks" it is time to take action. I realize there are studies that show "good" results with watchful waiting until surgery/radiation/hormone therapy are needed. However, there are statistically significant chances for scanning tool "misses", biopsy not sampling most aggressive cancer, Gleason Score under-grading, etc... There are numerous governmental and private institution studies that show the limitations with each procedure surrounding prostate cancer diagnosis. Our medical tools are awesome, but not perfect. For me, I am unwilling to take this chance. I went with a radical prostatectomy w/ nine lymph nodes removed, others address PC with radiation/hormone therapy. I knew of the chances surrounding incontinence, erectile dysfunction and other surgical difficulties, but life with my family and friends far far outweighed those challenges.

I so very much appreciate all the conversations on this site. It has been a great place to get advice and personal experiences over the past year.

Take care,

Jim

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