One year PO and now it seems I'm Stage 4 :-(

@jeffmarc sensitivity of the scan could be a factor for when the doctor wants to do the scan “ the sensitivity of PSMA-PET with the PSA level of less than 1, is somewhere in the range of 60% and in PSA above 2, the sensitivity is almost in the range of 95% to 97%,” from Urology Times.
We waited and I’m more confident of the results.

@zmarkv
Some people have very aggressive cancers and don’t want to wait Until their PSA hits 2.

I know somebody who was having their PSMA Pet test every three months, even though their PSA was only .2. The doctor felt that for them it was important to catch whatever came up, soon.

Because of my BRCA2, I would never want to wait till my PSA hit any higher than 1 Before getting a scan.

@jeffmarc I’d never presume to give medical advice. Just sharing facts and my experience.

@heavyphil said: "Ask your RO this question: if the cancer is inside the marrow, and not in the surrounding bone, how did it get there? What did it pass thru along the way? If the prostate is point A and the marrow of the humerus Point B, shouldn’t it be assumed that it might have traveled thru the lymphatic/vascular system to get there?"

That was a question we had but I'm not sure anyone will ever be able to answer how it got from down there all the way up and into my arm bone. My RO said PC kinda has a mind of its own. Both my RO and my surgeon feel that it escaped post-op. With that T3a final pathology I kinda figured it metastasize to somewhere but didn't think it would travel this far. I still like his thinking to hold off on the ADT until we see what my PSA level is at some point after the radiation. I've got ask him at what point do we do the next PSA test.

Update: I had my first round of SBRT radiation yesterday afternoon. Everything went well. I have four more to go with one being tomorrow. There's two 3 days skips in the schedule and I asked about that and the Radiologist said with as much as they're giving me it would be best if they ease off the treatments a bit with those couple of 3 day skips. There's actually some treatments scheduled for 5pm and later. I said I didn't think anyone was here that late and he said they have so many coming in for treatment right now they're to working OT. Off topic:
I still remember those days of OT on the railroad, used to pull a lot 12 hour days sometimes going in at 2am and working until 2pm and then coming right back at 2am the next morning if there was a major mainline breakdown.

My brother asked me what it was like and here's what I told him: "Just imagine being taken up in an alien craft and them scanning you body for 1/2 hour. Laser lights everywhere, the whole thing rotates around your body, shields come in on the sides over you and then go away and come back."

My right arm was up and I had to grasp a handle the whole time. They made a foam form of my backside the first time so you’re cradled in that. It’s nothing like an mri or ct.

@im62at2024 Glad you asked him - not surprised at his answer either!😖
But holding off on ADT is not a bad thing to see if the arm - and ONLY the arm - is causing the PSA rise.
I don’t know if SBRT to the arm ( or anywhere else) responds the same way as with the gland - ie, jumps, nadir, etc…But that is another good thing to know.
I hope it drops to “0” really quickly and you can put this all behind you. Best,
Phil

@im62at2024
Actually, when a metastasis gets to the bone, and is allowed to stay there for a while, it can get through to the bone marrow and do more damage to the bone that way. One guy I worked with had it gets so deep into his bone that he had to have a rod put in to a leg bone, the cancer Had done so much damage.

Before your cancer is even detected, it sends out dormant cells throughout your body that just sit there and wait until stressful conditions caused them to wake up.

As most of us already know, cancer cells can enter a dormant state and they can remain in this sleep state for years before they decide to wake up and cause problems. We’ve seen it in several of our members over the years. Thankfully, it is now a highly active area of research.
These dormant cells are known as DTCs – Disseminated Tumor Cells. This is not the same as metastatic cancer cells which are actively growing and spreading. DTCs are like hibernating bears with a greatly reduced level of metabolism, just enough to keep themselves alive but under the radar of our immune system. They undergo a dramatic change in energy utilization by a process called autophagy, which literally means “self-eating.” This makes them immune to standard chemotherapy, which targets rapidly dividing cells.
Dormant cells can also undergo a change in shape by reducing their surface tension and becoming softer and rounder. This makes it harder for immune cells to latch onto and destroy them.
As if this wasn’t enough to make you think of some sci-fi horror flick, the DTCs interact with the tumor microenvironment and summon proteins like Collagen III to act as a "blanket," signaling the cancer cell to stay asleep. If this environment is disrupted (by inflammation or injury) the cell wakes up and starts dividing.
Researchers are pursuing three complementary goals:
Keep them asleep,
Kill the sleepers, and
Wake Them and Then Kill Them.

here’s some more information about them
https://www.dropbox.com/scl/fi/8wyq61jnnxl9g9cbmek5g/Dormant-cancer-cell-details.html

It seems that AS allowed the cancer to get a running start all the way up to Gleason 8. In addition the bone mets were too small for PSMA PET in 2/25 but now are avid. What to do? By now you are well into salvage radiation. Hopefully the docs can zap the arm met. Else you will be on ADT for a long time.

Round 2 is done. I did notice they were going to have a National Cancer Survivor Day event at the institute I’m going to. They asked me if I’d like to join them for music, food, etc. but it didn’t start for another hour and half and I was feeling a bit off kilter so I passed. Maybe next year.

inRe: Posted by im62at2024 @im62at2024, Apr 30 8:23pm
I'm very sorry to hear that! Unfortunately Prostate Cancer is a "statistical nightmare", X% of men will get it, out of that X% will have it metastasize and eventually become castration resistant...Treatments work until they don't, then we move to something else that works until it doesn't...etc, etc, etc.

My own experiences I call "textbook": I started at age 61 with PSA of 19, biposy Gleason=8. By the time I started radiation my PSA was 290. Typical 30 treatments dropped the PSA to 0.06, then started to rise. PET scan showed metastasis to L5, a lymph in the belly and as far as my left scapula!!
Chemo (Taxotere) brought PSA down to 0.06 and PSMA-PET scans showed clear for 18 month.

Then...kaboom!...It came back, PSMA-PET showing activity at L4 and in the Prostate. I'm now on Pluvicto (2nd infusion this week and we'll see what happens...
I am lucky, I guess....The SUV at L4 was 4.3 and Prostate 3.1. My Oncologist didn't want to take any chances and started me on Pluvicto when my PSA hit 0.832, because it had been steadily rising this last year.
I am awaiting Genetic testing to get deeper into the disease pattern.
Prostate Cancer can be, unfortunately, extremely aggressive. Yes, it does seem to have a mind of it's own...and is smarter than any Oncologist and/or patient...
I've never had a SUV higher than 7.9, and I feel for you with SUV=28...That's very serious stuff (Like I have to tell you). SUV of that number I've never had and I wish you and your Oncologist...and researchers...the best in overcoming this, which you CAN!!!
Keep the faith!!!...and the research!!!