Sorry to hear of your frustration and situation. I literally wrote yesterday that I've come to the conclusion that "there is no permanent cure for prostate cancer", at least for those of us, as a subset here on the Mayo Blog. We are the unlucky ones. The guys who had successful prostatectomies without any consequences thereafter, don't follow or contribute to this Blog. We here are the subset negative exceptions, the outliers, the unlucky ones who have one or more issues. I wrote: "physicians say they 'practice' medicine", and it is true...it is an imperfect career of knowledge and skill - like many - where they are given what they are presented with, they "do the best they can", but it is only more by God's grace that we might live longer than we thought we might.
I am very frustrated in my journey, as seemingly well as it is going. Like anything in life, my journey has been full of the unexpected...the "ya but" exceptions...the "you have surgical margins and I was unable to remove all of the cancerous tissue", etc. I went from a 6.1 ng/ml PSA to a biopsy that was a Gleason 3+4=7 with only 6-10% of cells being graded "4" (so very close to having been just a 3+3=6), and my urologist saying "great...we caught this early and you'll be here ("alive") easily for the next 15 years", but now to the post-surgical pathology report that said: "EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion" to which my doctor said: "hmmm...seems that your cancer is more aggressive than I thought", and "since you are classified a pT3b, I want you to have a consult with a radiation oncologist because your kind of cancer nearly always comes back within five years." I should have asked him - and will next visit - "do you mean my 'pT3b' status makes me likely for the cancer to come back within 5 years, or do you mean 'ANY' prostate cancer will come back within 5 years?" Because, from what I read here in this Blog, all kinds of men with all kinds of Gleason scores and types of cancer, ALL seem to have the cancer return after the prostatectomy, and after the subsequent radiation, and after the subsequent ADT hormone therapy. It is just a race: will the continually recurring prostate cancer kill me first or will something else kill me first because, thankfully, prostate cancer grows slowly?
So, I went from an overly confident, overly optimistic urologist telling me that "we caught it early" and that I "have at least 15 years of life" ahead of me, to now knowing that I have a more aggressive form, even as "low-moderate risk" as it is, and it will likely come back within five years, so you likely need to have radiation and, "oh by-the-way" become incontinent and impotent for the rest of your life. The only good news is that I have had two successive PSA's at 3- and 6-months post-op that were both < 0.1 ng/ml ("zero"). The radiation oncologist is approaching things slowly: he has ordered my next two PSA tests as "ultra-sensitive" PSA tests in January and April (one year post-op). He wants at least two data points before he makes a decision on "if" and/or "when" any radiation therapy is appropriate. More "waiting."
This prostate cancer is like having a Raven land on your shoulder - or the devil himself...you know it is there, it taps you on the shoulder periodically saying "don't forget I'll be riding you for the rest of your life", and then one day it most definitely WILL tap you one more time saying: "I'm baaaack, and I am going to kill you." You will never live spiritually/emotionally free and unencumbered again. At 8 months post-op, I think about it on a daily basis...not a day passes where I don't think about selling some of my treasured artwork or musical instruments so my kids won't be taken advantage of in trying to sell them after I die. I don't want them to suffer that burden and perhaps guilt of knowing they sold "dad's" artwork or musical instruments for less than half of what they are worth, because they were taken advantage of. I think of whether I will out-live my 2-year old dogs, or if and when either of them or I will suffer the loss of each other first. This is all just sucks. All I try to do is live a normal life, do what I want, and plan on not being surprised when I hear that my PSA is starting to rise, or that I'll be in a diaper for the rest of my life because the radiation therapy - which won't work long-term - fried my bladder and urethra. So...long story short...don't expect anything long term. This is a "train" per your analogy that will go up and down, hard left, hard right, pick up speed, slow down, and give you a rough ride the entire time you're on it...until you're not.