Rumination

I feel for you. Part of forgiveness, is forgiving yourself. You/we can't change the past...we can only deal with the present and plan as best we can for the future. Continue to listen to and follow your physician's counsel.
One of the hardest things about prostate cancer is that there is no real sign or symptoms until it is quite advanced, often in the terminal phases. We don't get a lump or puckering/discoloring of skin...we don't grow weak/anemic and winded...we don't lose weight...we don't have night sweats...we mostly feel "normal." But...
We "all" get the news after our doctor tells us that we have an elevated PSA, and on DRE that he feels a "ridge" or a "bump", or an atypical feature of your prostate. Only then do we get the biopsy and the bad news to follow: we have prostate cancer.
I think a lot of men fall into the simple traps of being busy with career, wife, kids, and other activities. Many forget that there may be a familial history of prostate cancer and that we will likely be prone to it as well. Many men just don't go to the doctor, again because we are often too buy ("I'll go next month"..."I'll make an appointment soon.").
I fell into a mental laziness about it. My long-term physician of twenty years died in a car crash. Within 6 months, another physician bought the practice. He seemed like a good physician. Just before my physician had died, I was diagnosed as a Type II Diabetic. My attention and efforts easily leaned toward managing that through a separate physician. Then one day I called for an appointment with the physician who had bought the practice from the estate of the physician who had died. No one answered the phone. I tried the next day...same thing. I kept calling for a week with no answer. I was surprised there was no voicemail like: "We are closed for a vacation and will resume scheduling patients in two weeks" (or some such thing). Then, being busy, I forgot about it...for a long time. Several months later, close to a year later, I called again - no answer/no message. I the DROVE to my physician's office. There was a white metal lab specimen pickup box hanging on the door like it was after hours. It conveyed activity to me. It wasn't the lunch hour nor "end of day." I wiggled the door knob - locked. I then walked into the medical office of the physician next to my physician, and I asked what they could tell me? They said: "Oh...he closed his practice months ago and moved back to his original practice in the desert." I was shocked, aghast, that a physician with a practice would shut down his practice, and not send a letter or e-mail to all of his patients, saying that he was closing his practice...AND...with the recommendation of a few physicians to whom he was referring us for continued care into the future. So...nothing...this guy just packed up and left the area without telling us. Worse yet, I just sort of forgot that I am a man and need to have an annual PSA. Suddenly it was four years later. I found a new physician, but "new patients" never get in for appointments right away. I had to wait NINE (9) months before my new doctor saw me. When I explained that I had not had a PSA in what was now 3.5 - 4 years or so, he ordered one. "Bingo"..."bad news"... my PSA was 6.1 ng/ml. Not "horrible", but certainly cause for concern. Off I went for by biopsy last mid-December with the result of Gleason 3+4 =7 with just 6-10% "4" cells. My urologist was confident: "we caught it early...you'll be fine." But he said: "I'm taking your prostate...no use doing active surveillance...you have cancer. Then, I had my DaVinci Robotic-assisted Radical Prostatectomy in mid-April. The surgical pathology report yielded more ominous features and cellularity: Extraprostatic Extension ("EPE"), therefore, "surgical margins", cribriform glands, and slight invasion into my left seminal vesicle. I went from "you'll be fine, we caught this early" to "it seems that you have a more aggressive form of cancer, and we'll need to talk about radiation." My doctor held off so far because my first PSA, 3-months post-op was where we want it to be < 0.1 ng/ml. My urologist wants to wait three more months to see if the PSA stays at < 0.1 ng/ml or if it increases to 0.2 ng/ml or greater.
So...ALL of this because I had a flake physician close his practice and not tell me he was doing so, and me distracted/focused on managing my diabetes, and being flat-out brain-dead, for four years before I realized that I need a PSA...actually three years, but had to wait those nine months to see my new Internist physician. My cancer could have been caught much earlier when it was a Gleason 3+3 = 6, or less... or with a PSA of maybe only 3-4 ng/ml in the upper end range of normal.
So, now that I am one of the unlucky 10-20% that have surgical margins with a pT3b classification prostate cancer because it entered my left seminal vesicle, I have to wait and worry the rest of my life as to "when" it is going to reoccur. A pT3b has an extremely high rate of recurrence despite the prostate, seminal vesicles and vas deferens all being removed. With surgical margins (cancerous tissue left behind in me) and being a pT3b level, my urologist said it "will" come back "within" five years...it could be next month, next year, or maybe in the full five years, but it is very highly predicted to reoccur." "Oh great." So...my message is, you can't dwell on the past...what is done is done. Ya...we can be angry, but it doesn't change anything. Don't ruminate...it does your soul no good. Just stay focused in the present and on the future. All we can do is trust God and rely on our urologist to be skilled and do the right things at the right times. Good luck.

@rlpostrp

Did you ever considered adjuvant RT ?
We are thinking about it and I am doing a lot of research. IMRT is done preemptively to the pelvic area and glands before PSA even start to rise.

Some studies showed better results with doing that than waiting . My husband has uni-focal tiny EPE and one less than 2 mm inconclusive part of the margin. We did not have super-sensitive test yet, but I am want to be ready for any scenario.

@surftohealth88
You did see what I have posted about this from Dr. Efstathiou about what condition it should be done under?

Arghhhh. You posted the original! I should’ve looked before I wrote this.

@jeffmarc

Jeff lol, really that does not matter, honestly, do not even mention that ever, who cares who posted first ; ) !
Yes, that study is driving me nuts since I can not find anybody that actually DID adjuvant RT *sigh

I can not find anybody doing RT with 0.01 PSA and I do not blame them, not even doctors since it is so rarely done and little is known about it.

I also found some studies that did not find much difference between adjuvant and salvage (RADICALS-RT) and it states that adjuvant resulted in increased risk of urinary and bowel morbidity.

I guess for every study that is pro something , there is one that is finding the opposite. : /

Oh yes, lots of rumination. I was also PSA of 28. Maybe we could start a 28 club.

I've got lots of excuses about why I didn't get my PSA checked frequently enough, but the bottom line is I dropped the ball.

So. To keep me from ruminating about what an idiot I was, I stay absurdly busy. I lift weights 3x per week, I'm trying to learn two foreign languages and the piano through this brain fog (4 meds), I've joined two music groups (even though I'm not a great musician), we do some travelling overseas, and we're building a vacation home we really can't afford. Worst case scenario, it's a spec house for my wife.

I hope it doesn't sound like I'm bragging. It's just that cancer has made me realize that I am mortal and that each day counts, and no matter how groggy I feel I need to move move move move move move!