Last week’s bump up in my PSA level certainly knocked me from my blissful state of denial back into reality. I was surprised by how emotional I got about the results. On the good side, however, the emotions lasted only a few hours and were pushed aside by the demands of work.
After work, I wrote the study coordinator at UCLA about the gallium 68 (Ga 68) PSMA-11 PET/CT trial. I was pleasantly surprised when I received a reply within 18 hours.
In a nutshell, they’re still accepting participants to be randomized into two arms of the trial. In one arm, they will use the Ga 68 PSMA PET/CT imaging to attempt to detect the cancer in patients about to undergo salvage radiation therapy; the other arm just begins salvage radiation therapy without the benefit of the imaging. Of course, UCLA covers the cost of the imaging for those in the first arm of the trial.
Interestingly, they do have another related trial where the patients “pay around $2,800 USD, but everyone gets the scan and there are no obligations about what treatment patients should do next.” That has tremendous appeal to me, but I did send some follow-up questions on Friday.
Specifically, I wanted to know if they had any preliminary results that showed the rate of a positive scan result with a PSA of 0.13 ng/ml. If you look at the information in my previous post about imaging, you’ll see that the detection rates for a PSA of less than 1.0 ng/ml ran from 29% to 67% (median 51.5%). I suspect that the further one’s PSA is from 1.0 ng/ml, the less likely it is that you’ll detect the cancer cells.
Now I’m not trying to be penny-wise and pound-foolish, but $2,800 is a decent chunk of change to shell out for something that may have very little chance of doing what it’s supposed to given my PSA level. I mean, really—that’s the equivalent of a sweet Gitzo carbon fiber tripod with ball head and a new lens for my landscape photography. 🙂
Of course, I could wait for my PSA to get closer to 1.0 ng/ml, but that’s pretty scary.1 The longer you wait, the more the cancer cells replicate and spread and, by then, it may be too late to just zap the cells in the prostate bed (assuming that’s where they’re still at right now).
Because Ga 68 PSMA PET/CT is not yet approved by the U.S. Food and Drug Administration, I did ask the coordinator if there were any adverse events or side effects that have been identified with the imaging trial so far. That would be nice to know before injecting some unapproved glow-in-the-dark juice into my system.
I’ll get my urologist’s take on all this when I have my next appointment on 18 December. I’ll ask for another referral back to the radiation oncologist but, while that’s happening, I’ll likely email the radiation oncologist that I met with in May and ask for his thoughts on the Ga 68 PSMA trial.
While salvage radiation therapy has certainly moved higher on my list of things to consider, I’m still concerned about the potential long-term side effects impacting daily quality of life as a result. That will definitely factor into my decision-making process.
More to come…
1 – I ran the trend function in my spiffy PSA tracking spreadsheet and, using a linear trend based on my historical increases, it predicts I wouldn’t hit 1.0 ng/ml until December 2045. I’ll be just shy of my 88th birthday—or dead—by then. Perhaps I don’t need to sweat this after all… 🙂 (Yes, I realize that the trend won’t remain linear over time.)
2 thoughts on “Month 97 – Researching and Evaluating What’s Next”
Following your journey has given me insight and helped me define my own. Our decisions may be different, but the struggle is the same. Good luck with your latest challenge.
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Thanks for your good wishes.
I was just reading some of your own posts to understand your own situation, and I can certainly empathize with where you’re at on your own path. Your post “When Friendships Fail” really resonated with me. With this latest turn of events, I’ve been looking around at those in my circle to see who’s still there. A few that I thought I could count on the most have disappointingly ridden into the sunset. As you suggested, it’s time to cut my losses and move on, I guess.
Wishing you all the best,
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