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ADT and rising PSA
I could have added this to my previous discussions of “PSA Wrong Direction” but felt this is important enough for its own thread.
A couple of things I’ve learned since I started that first discussion in December:
1. If you are on ADT, your PSA is NOT SUPPOSED TO RISE!
If your PSA starts going in the wrong direction, even if it is a minimal increase, as mine was, DO NOT listen to the conventional wisdom of…
“It’s probably just a “minor bounce” or “lab variance” or “inflammation from radiation”. We’ll check it again in a few months”.
If you are on ADT, your PSA is NOT SUPPOSED TO RISE!
INSIST on monthly PSA testing immediately. Had I done so last December, the flare up on my spine would have been caught sooner, treated sooner, and I might still be able to walk normally and sleep through the night. Instead, it’s six months later and I don’t even start treatment until next week. It’s a $60 test. DEMAND it. If it turns out to be nothing, no harm, no foul. But if you can catch something earlier, maybe it can be treated before it hurts.
PSA:
4/21/25 - 30.11
6/7/25 - start ADT
7/9/25 - 0.55
8/26/25 - 0.19
10/2025 - IMRT
12/3/25 - 0.23
3/17/26 - 8.80
4/1/26 - 10.29
5/18/26 – 14.90
And…
2. Prostatic Adenocarcinoma is a very slow growing cancer…until it isn’t.
That is all…Don’t make my mistake.
Enjoy your day!
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@tattodice - Thank you!
@jeffmarc - Hi Jeff...only other thing noted on last PSMA PET was increase in uptake on one side of the prostate. RO said lingering effects and could take 9 mos to a year to show improvement after IMRT in October 2025. GUO did not address it before he retired hence new GUO contacted, we'll see what he says. At least L5 got zapped and I don't hurt anymore. Also, lymph systems uptakes have all vanished so that's pretty cool.
Findings: PSMA PET 4/30/2026
Neck: No suspicious tracer avid disease.
Chest: No suspicious tracer avid disease.
Abdomen/Pelvis: Fiducial markers in the prostate gland. Increased focal tracer activity in the RIGHT apical prostate adjacent to a fiducial marker, max SUV 19.3, previously 11.1. Decreased tracer activity in the LEFT apical prostate, max SUV 7.8, previously 10.0.
Interval resolution of tracer avid metastatic lymphadenopathy in the pelvis, retroperitoneum, and mediastinum.
Bones: Increased tracer activity associated with sclerotic lesion in the L5 vertebral body, current max SUV 17.5, previously 11.9. Increased sclerosis since prior study. No new tracer avid osseous lesions identified.
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1 Reaction@mjp0512
There are some pretty high SUV numbers. I would imagine that a good Genito urinary oncologist would want you to have those treated. After IMRT the SUV number should not be going up that much. I wonder if they actually zapped all of them.
Where do you live? I might know of a really good oncologist in your area. With all those numbers you are telling me about Getting top-notch treatment is really important.
Not sure if you are saying there is a problem in the prostate. If so, there are treatments when it comes back. Let me know when I can tell you about them..
@jeffmarc - I'm in the Penn Med universe which includes Abramson. New GUO came highly recommended by both my old GUO and my wife's oncologist, so I'll see what he has to say. Can always head back to Johns Hopkins if I'm not comfortable but the drive there sucks.
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1 Reaction@mjp0512 Sounds good.
At John Hopkins, there is a doctor called Channing Paller Who is pretty fantastic, If you’re not getting proper treatment, you could consider using him or even going to him for a second opinion.
I have never personally met My oncologist, She’s in the same city I am in, but I don’t have to go see her because she has all of my medical records. I talk on the phone or through video meeting with her every three months. She is a GU oncologist that is really incredible. I’ve never been able to ask her a question she didn’t have the answer to.
Just something to think about.
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1 Reaction@jeffmarc - Thanks, Jeff. I met Dr Paller last year when I was at Kimmel for a second opinion. I wasn't there to see her specifically, but she wandered through with a small group of oncology residents, and I became a 10-minute teaching guinea pig. At that time, my treatment plan was confirmed as correct. I've got her card around here somewhere. Maybe I'll see if she can do a remote review of my file. Think I'll wait for the next PSA test though to see what direction its going.
Funny thing though...I'm more concerned about "the plan" than I am about the Dr running it. I guess that's why I chase second opinions, just so I am assured "the plan" is right. I suppose if I had someone taking a scalpel to me, my attitude would change and the Dr would take precedent.
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1 Reaction@mjp0512 Yes! I'm 73, and before PCa, I was not used to seeing doctors - at all - until 2021 when I saw a urologist about a problem, then went quickly into six months of Lupron and radiation. All was well until last December, when PSA jumped. Same urologist, but a couple of worrisome kinks in their treatment process led me to seek elsewhere from his urological commercial chain. Geez, where do I go, how do I do this? I found it was easy. Pick up the phone and dial (I'm old) a number. Or get referred by the pro behind the door you just opened with your phone work.
I've done that recently for a couple of other needs, like cardiology and PT for a cranky hamstring. It's liberating. If you have decent insurance (I'm in the U.S.) someone will pick up on the other end. It just doesn't occur to a lot of us, who've always been taught not to question the doc. It's ironic that because there really is no "system" here, we can often make the Wild West work for us.
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2 ReactionsOK then...hurry up and wait time. New bloodwork on 9/1, new GUO on 9/8. In the meantime, I'll see if I can squeeze in some cataract surgery.
Getting old... (insert your favorite profanity here)
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