Artist Mark -
My experience with T recovery and PSA rise was shown here pretty thoroughly so I won't rehash all of it. In short, my T recovered surprisingly quickly after 3 years of ADT2. The PSA went up too, ultimately leveling off a little below 1.0 and still is wandering around there. I had a great MO (Maha Hussain), and when she left my case was handed off to another MO I hadn't met. Right then, my PSA first ticked up from undetectable to 0.2, and the new MO got a bit too panicky for my taste. I knew my PSA was likely to recover to a detectable level, this was fully expected with primary RT. (I fired that MO right away, and like the guy I have now). One hopes it stays undetectable, and if not that it levels off below 0.5 for best results. Mine's exceeded that, but seems to be fairly stable around 0.8, within a band of +/- 0.2 or so.
Your T may yet recover back up above the 200-300 range, and it won't be surprising if your PSA climbs some too. Don't panic too soon. I'm grateful in a way for the Phoenix recurrence nadir +2 definition, because by earlier criteria I would have embarked on secondary treatments nearly 2 years ago. And yet, without further treatment I seem to be in a pretty good place. This leveling-off would not have been seen if I'd started something else.
Uros tend to mix up recurrence values, not realizing a very different criterion for recurrence between surgery and RT primary therapy.
Having said all that, it still bothers me a little that they have this recurrence of "nadir + 2", with no recognition of low-PSA variants, or G9+ cases that generally put out low PSA. So, is our recurrence much further along when finally decreed to be such? If my G9 only puts out 1/4 the PSA of a 6 or 7, well, isn't +0.5 for me like +2 for those? I don't know, and neither do the doctors. Unfortunately, there aren't enough of us to move the needle in the medical community. They just sort of write us off, ignoring us really, because the studies just never have enough of our cases to develop conclusions. My MO is watching the pattern more than the number. We've been watching for a smooth exponential rise of PSA since that's evidence of a growth process (regular doubling time), even at a low level. If that pattern developed, my MO said we'd investigate much earlier. When mine hit 1.0, we were suddenly on alert
. But the good news was 2 months later it was down to 0.9, and 3 months after that down to 0.7.
That pattern is good news indeed, since a recurrence won't do that.
Regarding docetaxel, I don't know. Given the option, I might still consider it today. The study that kind of pooh-poohed it lumped a lot of 7s and 8s in with the 9/10s. I'm pretty cynical, so don't take this too seriously, but it seems possible there could be cost drivers behind some of the things recommended or not. It needs to have a rather clear benefit to be worth the cost of six chemo sessions. And if studies are not calling out the G9/10 cases, showing the benefit of treatments other than hormonal, then they don't see the justification.
One of the studies I found discussing G9/10 cases special considerations suggested that hormonal therapy isn't as effective for them, and other treatments like chemo or immunotherapy might work better if given right up front to these relatively rare cases. So I think the community is still divided on the effectiveness of docetaxel. I'm not sure we can actually over-treat our cases!
Hang in there Mark, the mind game is the worst. No one can really help, either. This is the best place I've found to vent these thoughts. You won't get, "Stiff upper lip, you're fine." BS from me. I get it, and can only offer agreement that this does often suck.
Post Edited (Redwing57) : 3/15/2019 8:43:34 PM (GMT-6)