Post Prostatectomy 6 years. PSA <.01 until now. Anyone else ?

@jeffmarc

Yes, I was less than pleased with the urologist who didn’t want to test my PSA for another year. Like I said, he did a 180 when he learned I had a pre-existing nodule, and immediately referred me to a urologist colleague who specializes in advanced prostate cancer, as well as ordering a PET scan.

The second urologist referred me to a radiation oncologist he worked with after seeing the PET scan results, as regards a treatment plan. That oncologist proposed 6 months of Orgovyx with IMRT. He cited the SPPORT trial in support of his recommendation. I had read enough literature at that point to question whether adding ADT to radiation would confer more benefit than risk (my PSA was still 0.11). Also, the SPPORT trial excluded any men with a palpable lesion, so it was unclear how that study applied to me, a point that the oncolgist conceded. I went for a second opinion with a medical oncologist. He was the one who wanted to start with a shot of Lupron, followed short-term Orgovyx along with a lutamide. Again, my PSA was 0.11. I thought his recommendation was way too aggressive. I was also aware at that point that many docs would not use hormone therapy for a relapse unless PSA hit 0.5. I ended up working with a different radiation oncologist who did not think hormone therapy was necessary. And at the point, I had decided that radiation was the only route I wanted to take.

My highest PSA indeed was 0.11 prior to radiation treatment. It first hit 0.11 in June 2025. Three months later, just before starting radiation, it was still 0.11 (and 0.097 on a Labcorp us test). I asked whether delaying treatment to get a doubling time was a sensible path, but both the urologist and RO felt that the PET scan results with the nodule showing intense activity warranted starting therapy sooner than later for better odds of success. I concurred with that assessment.

My next PSA test is on August 21 (9 months post RT). I will post an update on that once I have the test results.

I did know that testosterone increase didn't hang around long, I think just to repair tissue? But didn't know anything on testosterone being related to PSA levels. I understand that testosterone makes prostate cancer grow, that is why they give you ADT hormone treatment.
Now since I said that, makes a person wonder if they should exercise at all as it increases testosterone levels which can maybe make any micro prostate cells left behind grow. And with me having a positive < 3mm margin, EPE and LVI.
But then all the medical community tell me to keep up the physical exercising.

@diverjer
The PSA rises from heavy exertion when you rub against the prostate. You don’t always get the right answer from AI but the right answer is, nothing there, nothing to rise.

Did they get a reasoning why after three months it would make a difference?

@tom86 Interesting. I kind of understand their position but that also seems pretty rigid. Regardless, I sure am glad that the urologist who did my RARP was “old school”. And btw, he was one of the founders of The Urology Center of Colorado, which at the time was a top center in the Denver metro (has since been acquired by Advent Health System). He was also one of the first urologists in the Denver metro to use the DaVinci robot and trained many surgeons on the machine. I still be with him if he hadn’t retired.

At least you got clarity on the Stanford protocols.

You ask,,,

"what to expect going forward?"

"Wondering if I should expect a rapid increase now that it has reared it's ugly head?"

The answer to the first question...that depends...! Why, you don't have the clinical data to know. The better question to ask may be, what questions should I discuss with my medical team? Those questions from my perspective should center around:

What clinical data do we need? PSA, Genomics, Imaging, other labs such CBCs, CBC w/Differential
How will we go about collecting it - frequency and type of labs, imaging, when, with what, Genomic testing, somatic, germline...

The next part of that discussion with your medical team may be, what constitutes actionable clinical; data to require a treatment decision?

That too depends on what you and your medical team are thinking and discussing...

Are you thinking SRT only to the prostate bed? If so, as others have indicated, act before .03.

Are you thinking MDT only? Well, need imaging. When and what do you image with, depends...below .2, or .2-5, .5-1... statistical probability of locating activity intuitively increases the higher one's PSA. Though, with rapid PSADT and PSAV shifts the statistical probability to the left.

Are you thinking systemic therapy, doublet, triplet? Triplet generally seems to be a better choice in high volume PCa. If doublet, which ADT, which ARI, how long, 6-36 months, any de-intensifying criteria? High risk generally warrants 24-26 months of systemic therapy, there are different side effect profiles of the systemic agents so again, clinical data, insurance, personal preferences..,de-intensification may be PSA dropping to undetectable in the first six months, coming off treatment and monitoring

If you are thinking SRT, would you add whole pelvic lymph nodes to the radiation treatment plan and consider short term systemic therapy, 6-18 months...?

Age, life expectancy, co-morbidities are factors.

Then there is this, "doing nothing," " Playing the Long Game." https://ancan.us14.list-manage.com/track/click

Your second question, "Wondering if I should expect a rapid increase now that it has reared it's ugly head?" The answer, the collection plan you and your medical team craft together will tell you.

What would I do? were I you

Talk with my medical team, determine what testing, consults, frequency, my will use to monitor, collect and assess any activity.

Talk about what constitutes actionable clinical data,

It's ok to discuss treatment scenarios but without the clinical data, there should not be any pre-determined decision. Still, the treatment options may inform the collection plan!

Come back to the forum as you gather further clinical data to get feedback.

Go about my life!

Kevin

@melvinw
Protocol doesn't seem to change on a whim. Seems they need years of data, documentation, confirmation, consultations, research, etc. to make any real changes that may make a difference.
As with so many things going on. Men's real life experience is all I need to question, how many more thousands of men with these same testimonials that do not make it to this site have the same story. Also wonder if a simple DRE could make the difference for many. Wonder if any physicians take notice of these postings.

@tom86 Yeas, it’s hinky for sure…but they are finding very advanced cancers in men with very low PSA’s.
That’s gotta be the worst, because you’re sailing along with your 1.5 PSA and suddenly your nagging backache is diagnosed as metastatic PCa!!
It is just so great to be ‘average’…
Phil

@jeffmarc
Understand, Thanks.
No, AI didn't give any reason. Just if I added a time period after the question no matter how long the time it would say yes. I did play with Google some more and asked "why should I not exercise after prostate removal prior to a PSA blood test"
Answer below:
You should avoid heavy exercise for 48 hours before a post-prostatectomy PSA test because strenuous physical activity—especially cycling or heavy lifting—can cause temporary, false elevations in blood markers, and opinions are mixed on the Mayo Clinic Connect regarding residual local tissue impacts, making rest the safest way to ensure an accurate reading.

@diverjer
When I see AI referring to “ Mayo Clinic Connect” I am not so confident about what I am reading. Not sure who it is they are quoting.

I would like to hear it from a medical reference rather than this forum When I do an AI search.

@kujhawk1978
Nice to hear from you. Always appreciate how articulate and thorough you are. I am sure that has helped a great deal in your mission to deal with your own PCa. One thing that is disquieting; my surgeon (well respected, well known) has a belief with my 'very high risk' disease, rather than radiate early, it should be a wait until PSA reaches .2 (at least) and is seen on the PSMA scan so it is known for sure what area requires radiation. The rest of the medical community believes the earlier, the better when it comes to radiation in an attempt to "stop it in it's tracks". Of course, that may effect quality of life, overtreatment perhaps, etc. A delimma for sure. Hoped when I got the initial diagnosis (by now) they would have had more definitive answers about just this sort of question. With the trillions spent on cancer research it is a mystery why they haven't learned more (to me). I know they have come a long way in resent years, however, still leaves the patients with difficult decisions.