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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@fwintracy

I’m weighing in to share my own path. My PSA number trended up last year from previous tests but remained under 10. My urologist, after a DRE, suggested a biopsy which showed one “hot spot” graded at 3+3. At this point I’m leaning to active surveillance. Before deciding however, doc suggested an MRI which subsequently showed a “shadow that shouldn’t be there w 3+3.” This led to a second biopsy which showed a total of 5 hot spots; three 3+3s, one 3+4, and one 4+3. Game changer.

I’ve read that this path is not unusual at all giving the “hit and miss” of a biopsy. This all led to a bone scan which, thankfully, came back clean.

I’m 66 and have chosen a radical prostatectomy for Sept 14 (allowing my prostate to calm after the biopsy). I’d be lying to say I’m 100% confident this is the way to go. There are clearly side effects to any chosen path forward that each of us must evaluate for our own situation.

My point? Read all you can. Ask every question you can think of asking. Talk to friends and friends of friends who’ve walked the PCa path before you. Then, along with your wife, make the best decision for you. It’s not the same for everyone.

I wish you all the best of luck. May you each have the comfort of loving friends and family to support you and the benefit of a talented medical team to work with you.

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fwintracy - Awesome advice. One issue I did not see in this thread, it is critical to chose a center of excellence with any prostate treatment. My view - The quality of life, for the rest of your life, will depend on the expertise of the doctor and his/her support staff. I did a lot of research before deciding on my treatment plan, but then did as much research on the hospital and doctor. I ultimately went with Mayo-Rochester and chose a doctor with a long history of successful robotically assisted radical prostatectomy surgeries.

Best of luck with your procedure in September!!

Jim

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@hammer101

fwintracy - Awesome advice. One issue I did not see in this thread, it is critical to chose a center of excellence with any prostate treatment. My view - The quality of life, for the rest of your life, will depend on the expertise of the doctor and his/her support staff. I did a lot of research before deciding on my treatment plan, but then did as much research on the hospital and doctor. I ultimately went with Mayo-Rochester and chose a doctor with a long history of successful robotically assisted radical prostatectomy surgeries.

Best of luck with your procedure in September!!

Jim

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Excellent point, Jim. This was probably a more difficult decision for me. I’m fortunate enough to have an “in” with the A team at Johns Hopkins. At the same time, there’s a talented (and wicked smart) surgeon in my hometown I’ve chosen for the surgery. Again, I’d be lying to say I’m 100% confident in my choice.

I chose local given the surgeon’s experience with robotic nerve sparing surgery and talent (and I’ve researched him with medical professionals in town - including my daughter who’s an oncology NP at his hospital). I balanced the JH arguably superior talent against convenience (JH is 600 miles away), recovery and follow-up appts at home, and the belief my PCa is contained to my prostate. 🙏

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@fwintracy

Excellent point, Jim. This was probably a more difficult decision for me. I’m fortunate enough to have an “in” with the A team at Johns Hopkins. At the same time, there’s a talented (and wicked smart) surgeon in my hometown I’ve chosen for the surgery. Again, I’d be lying to say I’m 100% confident in my choice.

I chose local given the surgeon’s experience with robotic nerve sparing surgery and talent (and I’ve researched him with medical professionals in town - including my daughter who’s an oncology NP at his hospital). I balanced the JH arguably superior talent against convenience (JH is 600 miles away), recovery and follow-up appts at home, and the belief my PCa is contained to my prostate. 🙏

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fwintracy, sounds like you have done your homework well. So glad you were able to find a local expert, but totally agree with your pondering on this issue.

Best of luck with your surgery and I pray all goes well for you!

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@philipbrachko

After a year of being on ADT, and doing research for about an hour a day most days. I chose RALRP. Had it done 10 days ago. With me it came down to choosing a doctor and a place that I would have confidence in. Also, having the surgery leaves the option of radiation on the table. Most places will not do surgery after radiation. My research indicates, after 3 months and after 5 years, results are about the same. Bad side effects with both, It seemed to me that managing the side effects with the surgery would be more successful. HOPE I'M RIGHT.

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Wishing you a speedy recovery and good result. How are you doing with side effects?

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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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@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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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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If you are over 70, the prostatectomy option looks a lot more attractive provided one is happy with the incontinence issue.

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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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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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Gleason 9 requires aggressive treatment which seems to be working for you. I wish you the best.

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

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