Well I met with my MO today at Stanford who shared the disappointment on signs of recurrent PSA (0.15) suggesting the EBRT and ADT + Zytiga have not provided a cure or longer break.
Today’s conclusion is to retest in a few weeks for doubling time and confirms. She will also try to get me In for the research PSMA PET scan to see if anything can be identified. If a source can be identified clearly then some focal treatment may be available (re-radiation), but this sounded unlikely.
She indicated they may need to wait for another PSA test or until it goes over .20 before getting the PSMA scan, but we’ll see. After the scan, if nothing is seen then I’m probably looking at ADT again.
This battle continues….
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PGDuan
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Yes, best results are at a PSA value above 2.0 - in my case I needed to wait for a PSA value above 3.0. There is a recurrence after radiation if the PSA value gets by 2.0 over the nadir (Phoenix definition). So you can just wait until you have a recurrence according to this definition and then get your PSMA PET/CT.
On the other hand, in this study they already detected mets well below 2.0 after radiation: euoncology.europeanurology....
Yes. Waiting that long would be unwise. PSMA PET is very often positive at 0.5 and even down to 0.25 (as it was for me). That was UCLA’s cutoff level for their 68-Ga scans, though there will be more false negatives at lower levels of course.
When my PSA went from .5 to .9 I got a PSMA. It clearly showed a small pelvic node that had PCa. (mine was recurrent from treatment 9 years ago). Do not wait that long for the PSA to get that high! By the way, my Doc said that a regular PET scan or mri would have shown nothing....
I just decided to follow you. I stopped Lupron & Zytiga about 4 months ago after 24 months on. I have been undetectable for almost 2 years now, but now I feel I am walking a tightrope waiting for a recurrence. Have already discussed with my oncologist the plan once my PSA recurs. I wish you the best of luck!
Yep, just taking it one day at a time. Kind of nervous at times about recurrence, but staying positive and grateful for all the newer available treatments if the battle continues....
Sort of what you expected I guess. If you scan too early there is nothing to see. Scan too late and well... maybe see too much of it. There needs to be a middle road for SOC. Waiting for cancer to spread further may make impressive images, but doesn't seem to make a lot of common sense. MOs seem to be missing a basic understanding of learned helplessness. Can targeted radiation really make a big difference or is it better to put the cancer back to sleep with ADT? We end up reading a lot of "magazines" in this waiting room. Surf is always up somewhere.
Don't let PSA get past 0.5 before you start Protons. The cure rate drops. Protons can be used to salvage IMRT. Did radiation work for a while, and Have you tried the oral anti-testosterone (Antagonist) relugolix? This is what I would prefer over Lupron (pro-testosterone Agonist drug that eventually has anti-testosterone effects) during radiation.
Orgovyx ((Relugolix) is what I am on (oral daily pill) in place of the painful monthly injections of Firmagon which was the only Antagonist prior to the January approval of Orgovyx. Seems to be working well.
Thanks. How did you find the source of Psa for the proton therapy? Where did you have it done?
I am trying to get the Stanford PET scan but don’t have assurances that it will be scheduled soon. I’m calling UCSF but and will consider others to get it sooner and pay out of pocket if needed. All presuming a second confirmation of detectable PSA. Thanks
Yes, very troublesome. But not yet conclusive. It can take a few years to reach a true nadir of PSA after pelvic EBRT for nodal disease. And there can be bumps along the way when slow growing cancer cells finally get around to dividing, then die and release their PSA. So keep monitoring as advised. If it rises progressively then it will require a repeat PSMA scan to see what is there and a new plan for systemic treatment. But I think there is no need for panic at 0.15. I was in very similar situation and my PSA finally dropped below 0.10 after 20 months after the Pelvic RT. Fingers crossed for you. 🤞
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