Not that you would want to but if you could do it all over again?

Got it...thanks. Sounds like you are doing well. When you first read that list of side effects from the hormone therapy though, it is rather daunting. I truly appreciate your response.

I had 30 round of proton radiation for a low risk (Decipher test) for a 3+4-7 Gleason score with cancer in prostrate only with negative bone scans and PSMA test.

I had my procedure done at UFPTI in Jacksonville Florida as Mayo Jacksonville did not offer proton radiation. With all the information I have read since my procedure about the 5 high dose treatments I think the only thing I would change would be going to Rochester or Phoenix and have the 5 high dose treatments.

The care and treatments at UFPTI were nothing less than outstanding but was outside my preference to stay within Mayo. I am not sure they offered the 5 high dose option and at that time had not heard much about the high dose 5 treatment plans. I have a ICD/Pacemaker so UFPTI physics department recommended I get pencil beam radiation treatment to ensure the least amount of radiation was around the ICD/Pacemaker. I had to have the pacemaker checked weekly to ensure the radiation was not affecting it.

I would have kept my decision to have the Decipher test, PSMA, and the bone scan. It was really assuring to have my Decipher test lower my diagnosis from intermediate to low risk, PSMA negative and bone scan negative. I would also still have gotten the Space/Oar instead of balloons.

I try to avoid woulda, coulda, shoulda scenarios.

I opted for RARP when I was diagnosed at Gleason 8. Post surgery, that was downgraded to 7.

I can't change anything at this point and it seems a waste of time pontificating otherwise to me....

I fired my idiot PCP. They really don't have a clue and just see you for the $$$$. Breathe in, breathe out, that will be $200.

Same here. My local urologist was dangerously wrong even about the basics. Glad I went elsewhere.

When I had BCR after surgery, my urologist and radiologist said I should do SRT to the prostate bed. I had done some homework and data was emerging about location of recurrence in high grade PCa with clinical history such as mine, PSADT, GS, time to BCR...

That data indicated the spread was more often than not in the PLNs and the radiation treatment field should be extended to include the PLN system and six months ADT.

My urologist and radiologist said no, there wasn't long term data to support that...! I acquiesced, 90 days after the SRT to the prostate bed only, my radiologist turned to me and said "Kevin, your PSA is .7, it was .3. SRT failed..."

From that point on, I vowed that any treatment decision would be made jointly but I would have the 51% say. So, when my urologist and a 2nd one said monotherapy, ADT, for lifetime, I said no, triplet therapy. That brought 4-1/2 years off treatment. This go around, same, doublet therapy for a defined period, if clinical data supports, stop, actively monitor.

Kevin

I have no understanding of the thinking process behind PSA tests not being needed. After an annual physical, my PSA went from 3.0 to 12.6 in one year. Flags came out all over the place. Tests (MRI's, Pet Scan, blood, 14 biopsies, etc.) then showed Gleason 9, aggressive, advanced, Grade 5, stage 4 prostate cancer. If I had not had the PSA tests done, I would not have had treatment and the cancer would have spread to God knows where. Yes, I had radiation and hormonal treatments that brought the PSA down to undetectable. Now, it's a PSA check every three months. No, I probably would not be here or would have a very different story to tell if I hadn't checked the PSA during a standard annual physical. I cannot understand why anyone would not take a simple blood test to follow periodic PSA results.

No.

I'm 7.5 months post RP @ age 74. Followed PSAs since age 49, as father died from PC. Rise started 2020. Once it reached 6 in June 2022, I knew. But I delayed for 5 months to complete something frivolous but important to me.

Post op path was 4+3, seminal vesical invasion, negative nodes, margins, bladder neck and no extension.

Now I have the trifecta: undetectable PSA x 3, return of bladder continence, and adequate sexual function with Viagra. I attribute all that mostly to my excellent surgeon at Kaiser, and partly to my very good physical condition (no other medical problems, 90' of exercise daily.)

If i do get a "biochemical recurrence", I will worry that the 5 month delay let some cells thru. But for now, no regrets.

You had the prostate removed when you had a .091 PSA? Isn't that in the normal region? Mine was like 5.7.

Same here