Scheduled for a Radical Prostatectomy and having Second Thoughts

Do you know if any of these people had intraductal and/or cribriform, seminal vesicle invasion, or other aggressive issues?

Oh man, even after I wrote the word “journey” I began to regret it! But it seemed appropriate for someone just starting out on this ‘road’…but yeah, it’s overused for sure.
My least favorite word is “battle” - even though it may be the closest thing we have to describing the ups and downs of this thing. But it is thrown around so often it ceases to have the same impact. I never battled anything - I just stretched out on a table and passively got cut open ….and then fried…no battle. Perhaps “beleaguered” or “besieged” is better because of the powerlessness we feel?
One thing’s for sure: “…we’ll just have to wait and see what happens”.

Peter, that is a very large bump in the road, indeed. If memory serves, you’ve been having this problem since November? December of 24? Any improvement at all?
I remember our Kegel discussions and you were getting no help from your surgeon or PT, right?
What are you planning to do about this?

Well, my physio fled to Canada.
5 or 6 hours (I lost count) of instruction, ultrasound & eventually a not-fun anal probe thing for biofeedback... very little movement.

I had my 3-month post-op visit with the surgeon. He was appalled that I'm so useless & apparently I'm the only patient he's ever had who can't move his pelvic floor.
I have a feeling I'm going to end up in the medical journals - in the believe-it-or-not section.

Anyway, he's referring me to a "sphincter specialist" to assess me for an artificial urinary sphincter.
No idea when that is. Can't wait.

I already have an appointment in 2 weeks for my new physio, but I think I'm beyond help there.
I'll just sit there vent to her until my new surgeon turns up one day.

Mine is a similar case although my PSA was 8.8. My first inclination was “cut it out” and I scheduled a robotic prostatectomy. After settling down I started researching and have decided on SBRT 5 sessions. Most of what I’ve read makes me skeptical that surgery is ever a very good option unless you’re in a small percentage of people who won’t tolerate radiation. Much of what I have read indicates that despite a clean PSMA PET, higher Gleasons often have microscopic cancer in the margins or pelvic lymph nodes. That means they may need to add radiation after prostatectomy and you get double treatment (triple if ADT) and potentially double quality of life side effects. I will do 5 proton sbrt treatments over 2 weeks which I believe will hit small margins, seminal vesicles and pelvic lymph nodes. There are some tests out there to help guide your treatment plan. Prostox assay can see whether short or long term radiation is best based on your individual genetics. Also Artera AI to see if ADT is even going to be beneficial in your unique situation. Also important to take into account your own comfort level from a psychological perspective. Will you feel more more confident with one type of treatment over another. I have found many YouTube videos from very reliable sources that have helped inform my decision from UCLA, MSKCC, MD Anderson and others. Prostate Cancer Research Institute has been a very good source of education as well. Best for any choice you make. Solidarity!

Hey Wandyfisher, your 5 visits sounds like a Cyberknife type treatment. Perhaps I am mistaken, but I don’t think that particular treatment targets pelvic lymph nodes - only the prostate and perhaps 2-5 mm periphery. I would check on that if pelvic nodes are a concern.

A little background on me: I had robotic surgery done in 2019 by Dr David Samadi in NYC. I chose him because of his vast experience and his early adoption of the robotic platform. Turns out, he is a “celebrity surgeon” - unbeknownst to me at the time - and is frequently on TV discussing men’s health. All I knew by word of mouth was that he was one of the best in the world….and expensive!
He has developed his own robotic approach called SMART, in which he approaches the bladder neck and urethra very differently than most surgeons.
I can’t really describe it all in layman’s terms but his aim is to totally minimize incontinence. I had the same initial leakage, etc after catheter removal and two bouts of bedwetting (humiliating!) but after that, with minimal Kegel exercises on my part, I am totally continent and can start/stop my urinary flow midstream with no effort.
I never realized so many men suffered from this terrible affliction until coming to this forum. I can only conclude that the surgical technique itself is to blame for these urinary problems. Your “inability” to move your pelvic floor muscles is a total smokescreen. Your surgeon probably tells this to all of his patients since it is his technique which is at fault.
NOT saying he did something wrong! He’s just doing it the way most others are - that’s the real definition of “standard of care”. Just do whatever everyone else is doing - even if there is a better way- and you will never have a problem. Digress or buck the trend and you will be punished.
Dr Samadi has made many enemies for his success and maverick ways and has been pilloried in the press for everything from negligence to insurance fraud. He actually addressed these issues with my wife and I during our initial consultation. I told him I was there for only one reason and could care less about finger pointing by others. He told me that he had never experienced such professional jealously before and couldn’t quite understand it.
Sorry to digress…it seems to me that your best option at this point is an artificial sphincter since your own natural one was damaged beyond rehabilitation. Your surgeon and PTs are useless and part of the problem - IT’s NOT YOU! I recommend you find the absolute best surgeon for your reconstructive procedure and pay privately if you have to. It’s your job to educate yourself about your condition and interview your top 3 picks. If you ask any one of them a question and they blow you off or poo poo your concerns get up and leave. You want someone experienced, recommended by others (word of mouth or trusted online reviews) and empathetic most of all. Best to you, Peter…
Phil

Thanks. That’s one of the questions I have for my RO as I know there is a possibility of microscopic lymph involvement even though none was seen in PSMA PET. The MSKCC nomogram for me shows 14% chance for lymph node involvement. I thought I read somewhere that SBRT lymph node radiation was possible. Maybe it’s just not part of the standard protocol. I’m really trying to avoid a 20-40 session IMRT. Lots of considerations and consultations still ahead of me before I finalize my choice. How much did nomogram predictions factor into your decision making process?

A little background on me: I had robotic surgery done in 2019 by Dr David Samadi in NYC. I chose him because of his vast experience and his early adoption of the robotic platform. Turns out, he is a “celebrity surgeon” - unbeknownst to me at the time - and is frequently on TV discussing men’s health. All I knew by word of mouth was that he was one of the best in the world….and expensive!
He has developed his own robotic approach called SMART, in which he approaches the bladder neck and urethra very differently than most surgeons.
I can’t really describe it all in layman’s terms but his aim is to totally minimize incontinence. I had the same initial leakage, etc after catheter removal and two bouts of bedwetting (humiliating!) but after that, with minimal Kegel exercises on my part, I am totally continent and can start/stop my urinary flow midstream with no effort.
I never realized so many men suffered from this terrible affliction until coming to this forum. I can only conclude that the surgical technique itself is to blame for these urinary problems. Your “inability” to move your pelvic floor muscles is a total smokescreen. Your surgeon probably tells this to all of his patients since it is his technique which is at fault.
NOT saying he did something wrong! He’s just doing it the way most others are - that’s the real definition of “standard of care”. Just do whatever everyone else is doing - even if there is a better way- and you will never have a problem. Digress or buck the trend and you will be punished.
Dr Samadi has made many enemies for his success and maverick ways and has been pilloried in the press for everything from negligence to insurance fraud. He actually addressed these issues with my wife and I during our initial consultation. I told him I was there for only one reason and could care less about finger pointing by others. He told me that he had never experienced such professional jealously before and couldn’t quite understand it.
Sorry to digress…it seems to me that your best option at this point is an artificial sphincter since your own natural one was damaged beyond rehabilitation. Your surgeon and PTs are useless and part of the problem - IT’s NOT YOU! I recommend you find the absolute best surgeon for your reconstructive procedure and pay privately if you have to. It’s your job to educate yourself about your condition and interview your top 3 picks. If you ask any one of them a question and they blow you off or poo poo your concerns get up and leave. You want someone experienced, recommended by others (word of mouth or trusted online reviews) and empathetic most of all. Best to you, Peter…
Phil