Thanks, everyone. I appreciate the thoughts. You guys "get" this stuff like no one else I know.
The return to normal T has made me feel better than better, maybe even great. I feel like my old self again, my whole demeanor is so much more positive, upbeat, playful, like I've always been. It's in hindsight that I see how much the HT affected me in so many ways. My workouts have been quite successful in rebuilding muscle strength. My job involves occasionally handling fairly heavy things, and that's now as easy as ever. Libido is almost normal again, though with my partner's being flatlined that is not as much of a blessing as one might think. So, those are significant QOL positives for getting off of HT.
And to other concerns, Bolo, and others "lidat"
, the reason for going off of HT in my particular case is that it was done as part of a multi-faceted primary treatment. The primary treatment plan was done with curative intent. So, do the radiation thing, endure the companion hormone thing, and then stop all the things. Supposed to have put it at least in durable remission, if not a "cure" per se (with G9 they don't often use that word).
So, the goal has always been, and it may still be true, that after all the treatment the PSA comes up a little with recovering testosterone, and then just levels off. The residual prostate, well-cooked as it is, will make some low level of PSA in a testosterone-fueled environment, but never much and not a rising amount. More testosterone won't increase that rate, it will do what it will do as long as it has at least some minimum amount to work with. Kind of like once you have enough water to float the boat, it doesn't matter how much deeper the water gets.
A stable level of 0.5 would be fine, post radiation therapy. Wonderful, really. Optimum response one might say. But, the lengthy term on HT obscures the usual post-radiation trends. There are few if any studies that help define what the PSA pattern should look like
after what we did for treatment, after HT. Kind of like the old mariner's maps that just said "here be dragons" for areas they hadn't explored!
So, without further academic guidance, really all that's left is to see if maybe this 0.5 stabilizes, or trends up. The MO said, "We'll see what's happening in March with this disease."; he certainly wasn't dismissive, but wasn't overly excited either. We talked very briefly about
the T saturation theory, and he's exactly on the same page I am. Another 0.2 reading would have been great. A little, very little more, would have been ok. At 0.5, it generates a bit of concern just due to the trend up so much from the 0.2 in 3 months.
Next steps? If it hits 1.0 or above, they're considering trying scans to look for anything identifiable. If this is fueled by the grade 5 cells, which don't make much PSA, then there might be something big enough to find. Then we're into the whole argument about
whack-a-mole going after individual lymph nodes and so on, or do we just acknowledge the thing's gone systemic and plan on HT restarting. Ponder HT early or late, continuous or intermittent, and all that jazz.
Phooey. The hard part of this is the watershed aspect of "we killed it", vs. "we didn't kill it and we'll have to manage it". We'll just have to see what happens in March, I guess. I feel like a bit of a wuss, knowing there are others here who are dealing with confirmed recurrence and metastases. It seems I'm learning a bit of what that experience is like, even if not really there yet.
This got long, but I think about
this fairly often. Most of the time I can keep the lid on the bottle, but once in a while it just pushes its way out and back into my awareness!