Scheduled for a Radical Prostatectomy and having Second Thoughts

In the words of the first radiation oncologist I consulted: “There is no right or wrong decision!”
Sounds simple but after looking back on the last 6 years since being diagnosed, it’s the best advice I’ve ever gotten.
Every one of the great posts offered here reinforce the fact that there WILL be side effects of some kind no matter what treatment you choose. You can draw up a list of this one vs that one and you’ll drive yourself crazy trying to figure out which one you could live with over the other…it’s a waste of time.
Today’s surgical and radiological techniques are both amazing and will get the job done…..maybe.
The more you live and learn with this disease the more you realize that it is totally unpredictable; PET scans, PSA’s, Gleasons and Deciphers are all great - but only up to a point. There are NO guarantees that your test results will accurately predict the future path of your journey.
This forum is filled with men who have metastatic disease - despite low scores, clean scans, etc. Others, whose high scores and scans positive for spread foretold shortened lifespans, are here going strong for decades.
So there are no wrong decisions - nor correct ones! The reason I chose surgery was due to my pessimistic nature: I always plan for failure and 5 yrs later I got it. Just finished radiation for recurrence so my “guess” for surgery was correct….or was it? Maybe radiation would have killed it all the first time…..or not?
See?? An endless loop of second guessing that never ends. Just make a decision that feels comfortable for YOU and no one else; put your head down, Charge in and get it done. Best of luck!
Phil

I can add that whichever treatment you decide to do, do it soon (Gleason 8) and have it done by the best surgeon or radiation oncologist you can get at a center of excellence. It makes a big difference on treatment side effects. In addition to the others that have already commented, @bens1 has great input on the newest radiation treatments for minimizing longer term side effects.

Additionally, once you have your chosen treatment do not start second guessing your decision. Starting down "What If Avenue" is a trip that ends poorly.

I chose RP at age 72, and would do so again.
Removing the prostate resulted in a complete pathology report, which confirmed Gleason 9 with EPE (extraprostatic extension, meaning PCa cells outside the prostate). Surgical margins, seminal vesicles and lymph nodes clear.
My PSA was .19 ninety days postop, resulting in Salvage Treatment of radiation to the whole pelvic floor and lymph nodes and 4 mos ADT.
My PSA for a year post salvage treatment has been < .02 undetectable.
My thinking, hopes and prayers are that the RP removed the bulk of the cancer and the Salvage Treatment "cleaned up" the escaped PCa, and that I may have an extended period of time before re-recurrance.
One of my thoughts has been that no other treatment protocol would have identified the EPE, and resulted in prompt treatment of it.
All of that said, Radiation, as primary treatment, is a very reasonable choice for others.
However, I wonder what would have been developing over time from the EPE if it had not been detected by postop biopsy and treated.
Also, I was initially diagnosed by a surgeon at a teaching institution, but had a 2d opinion and surgery at a COE, which I believe made a dramatic difference in my outcomes. I recognize however that there are excellent surgeons at other institutions and practices and everyone does not have access to a COE.
Best wishes for a successful treatment.

Thoughts from my own experience:

1. When I got a 2nd opinion at the local center of excellence, they reviewed my biopsy slides and changed the one spot with 4+4 to 4+3. The surgeon I chose to do my procedure said that made him more willing to perform nerve-sparing if it were possible.

2. As a result, within 7 months of surgery, I had full return of continence and erectile function @ age 74.

3. Surgery after radiation is almost always more difficult/complicated with higher risk of damaging something due to scaring from radiation. That factored into my decision.

Thank you for your thoughts and congratulations on your outcome. It is indeed scary as I approach the surgery date. I trust the people at Mayo Phoenix but still am scared about my future quality of life. I hope at 69(soon to be 70) my outcome is as good as yours. Happy New Year to you and I hope you stay healthy.

Thank you for sharing your experience and thank you for you good wishes.

I was diagnosed with two cores of cancer, one at 3+4. An earlier MRI showed nothing. I immediately decided on RP as I wanted cancer removed. I had a month prior to surgery and did Kegels religiously. After the surgery (Nov. 2023) my pathology report showed my Gleason was actually 4+5 and cancer right at the capsule. The surgeon believes he got it all 🙏. After my catheter was removed I had another month to do Kegels before my Followup appointment. Bottom line is I have had ZERO incontinence issues. Also, I have had 4 PSA blood tests in the last year and all have come back < 0.01. Praying everyday, but so far so good. Best of luck to you as well.

I was diagnosed with Gleason 9 grade 5 encapsulated two years ago. Chose proctectomy and regret it as the surgeon left cancer in me. 2 years later starting ADT and Radiation. My neighbor was just diagnosed with G7 Grade 3 and will be doing High dose rate (HDR) brachytherapy. I think there are risks of leaving behind surprise either way as the PSMA Pet Scan can only diagnose PSA that is at a high enough level to be detected at the moment of testing, is my understanding. Post side effects aren't that bad from my experience. Kegels worked for me, and I quit wearing a pad 4 months after the procedure. I get the occasional drip and suggest wearing sport type of underwear as they don't hold water like cotton does and doesn't stink. You might want to consider buying black pants and shorts as they don't show any leakage. I'm a sports official and the only one on the field that knows I leaked. You will learn how to sit on objects other than chairs. I like to think of the bladder neck as being like a Cool Whip nozzle. If you bend it, it will spray lol. You'll figure it out. Some have problems with erections and others don't. I fall into the latter. A dry orgasm is possible. None of these except leaving cancer behind is a big deal for me. Just had to learn the new me. Good luck and hope my shared experiences were helpful.

To add to this, when I started this "journey" (I still hate that word), I spent HOURS every day reading medical journals, message boards, books etc. to the point that it was consuming all my free time, even after getting SBRT treatment.

My therapist finally woke me up by saying "you are NEVER going to find the answer you are looking for, which is 'how will my specific case turn out' because all the numbers and statistics and articles can only give guidance and generalities."

I realized she was right and that I made the decision I thought was best for me at the time after consulting with multiple doctors and now I just have to wait and see what happens. It's sometimes easier said than done, though I'm trying.