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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I'm so sorry to hear that. Did you end up completely paralyzed, or can you still walk with a cane or walker?
Also, are you taking an ARSI (like a -lutamide or Abiraterone) together with the ADT? It can make a big difference.
@northoftheborder - Hi north...not paralyzed thankfully. Cane required some days, some days I can manage without it. I just have to remember to walk with reduced stride, you know, like the old man shuffle. Getting up out of a chair is becoming a challenge at times. Have to right the ship before that first step. Getting zapped next week so hopefully it'll knock out the pain, and I can start to recover.
I've been on Orgovyx and Nubeqa since June 2025 so have always had an ARSI with ADT.
Thanks for asking!
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3 Reactions@mjp0512 If you're seeing a physio, consider asking for exercises to help develop your hip abductors and adductors. They helped me a lot with balance when I was learning to walk again, especially once I started trying without the cane.
After spinal damage, you don't necessarily ever get all your nerves back, so you end up overtraining some muscles to compensate for the ones that no longer work as well.
Best of luck!
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6 ReactionsHi, Brother!
Hang in there, praying for your health!
Did I understand correctly that your PSA didn't drop to an unnoticeable level? That's one.
And two, have you tried taking some mushrooms? That's two.
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1 Reaction@denis76 - Thank you for the prayers. I consider myself very fortunate. I haven't lost function, so nerve damage is minimal. I've seen and read of much worse. North being in that group. It just hurts which is causing reduced mobility (and interrupted sleep). Taking a full step is out of the question. I'm hopeful that resolves once zapped next week. If not, PT here I come.
You are correct in that the lowest my PSA dropped to was 0.19. Never made it to undetectable.
What kind of mushrooms?
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1 Reaction@mjp0512
\\What kind of mushrooms?
Coriolus versicolor or Inonotus obliquus
Talk with your doctor. Try fired at the black spider with all guns.
One more
Eat lots and lots of sauerkraut (it boosts your immune system) every day and Propolis honey!
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1 Reaction@denis76 - Ha...already drink chaga tea pretty regularly. Enjoy it sitting around an outdoor fire. Have scars on my knuckles from getting too close to the grater. 😮
Is it OK if I mix some Sabrett hot dogs in with that sauerkraut? 😁
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4 ReactionsThat was an incredibly fast rise in PSA. It sure does seem like they didn’t radiate all the right places. Did they do a PSMA pet scan before the ADT? Did they review the PET scan after your PSA started rising to see if there was something showing, and they missed it when doing IMRT?
This definitely should’ve been caught sooner.
@jeffmarc - Hi Jeff. My treatment plan followed all guidelines. Believe me, I checked. PSMA PET scan 6/6/25. ADT/ARSI 6/7/25. IMRT to prostate 10/2025. The L5 lesion was known to exist after the first scan last June but was minor and assumed would be contained by ADT. The error here is the conventional thinking that since my initial PSA increase in December was only 0.04, it was probably just irritation from IMRT or a lab variance. That thinking is flawed and the point of this discussion. I had been on ADT for 6 months at that point. My PSA should not have gone up. Noone, including myself, expected castrate resistance in 6 months. Had I insisted on a follow-up PSA test in January, I'd be in a different place now. Once the March PSA of 8.80 turned up, and confirmed two weeks later in April, it triggered the PET scan and MRI and treatment plan that could have been triggered 4 months earlier. My major concern, at this point, is how fast moving and aggressive it is. The timeframes for major changes are measured in months instead of years like they normally are. Additionally, since my prostate still exhibits active SUV uptake, radiotherapy resistance has come up in conversation. I guess we'll see after I get zapped next week.
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1 Reaction@mjp0512
I'm not a doctor, but I've heard that if you treat cancer aggressively, it becomes aggressive itself. Let our wise Jeff correct me.