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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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@mjp0512
Xgeva is real good, Zometa Has a lower chance of osteonecrosis. You could ask your doctor about it.
@jeffmarc - I'll do that. Thanks!
Drumroll please...
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
5/26-28/26 - SBRT to L5
7/2/26 - 3.45
Won't know if this is good enough to keep me off chemo until next week. 🤞🤞🤞
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8 Reactions@mjp0512
Yeayyyyy !!!! 😃
IMHO it is a BIG drop in just 2 weeks 🍀 !!!
Maybe it will continue going down !!! : )))) What a relief ! It was that spot on your spine that caused all this turmoil and now it is gone !
Do they plan to do yet another PSMA scan in near future or will just go by PSA levels ? Maybe the rest of this what is seen is just a "bounce" ? I am not very knowledgeable about RT as initial treatment, but I know that "bounce" is mentioned often. I wonder if other tissues can have "bounce" , same as gland itself. Maybe @jeffmarc knows : )))
@surftohealth88 - Hi surf. It's actually 5 weeks to the day since SBRT. Maybe it's good enough for now. I don't know but sure hope so. As far as "bounce" is concerned, that's what got me here in the first place. I've been on ADT since June 2025. There should be no "bounce". I'm guessing another PSA test in 30-45 days and if rising, another PSMA PET but that's just a guess. GUO appt on 7/14 will reveal details.
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2 Reactions@surftohealth88 @mjp0512
That is a real nice drop after RT. When I had my L4 zapped, I dropped from .2 to undetectable in 1.5 months. I was on Orgovyx and nebeqa at the time. He started at a much higher number.
After radiation, PSA can bounce around a little bit, And for some people, it can take a long time to drop To the lowest level they will reach. I’d want to see his results in another month it may continue to go down and chemo may not be necessary.
The important thing is What was found in the PSMA PET scan. Was it just that one spot on L5? For that, they would not normally set up chemo.
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2 ReactionsJust got back from follow-up with my GUO...
Good news - PSA came down enough to kick the can down the road for another six weeks.
Bad news - He's retiring in 5 days. He was the only GUO at my urologist office, so I have to switch over to the GUO at the oncology practice. Too bad, very convenient having both under the same shingle. We'll see if the new guy is on the ball. If not, back to JH.
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2 Reactions@mjp0512
YESSSSSS !!!! 😍
Those are GREAT news !!! I am so happy for you : ))))
What is your PSA now ? : ))))
You must be feeling a big relief now ! I hope that you will find new good GUO very soon 🍀 : ))) For now - time to celebrate : ))) 🕺 ! yeayyyyyy
Praise God! Good for you !!!
@surftohealth88 - Hey ya surf. Yep, no chemo = good news. Decision was based of 7/2 PSA of 3.45. Next test 9/1. GUO told me that I would probably be on current meds (Orgovyx & Nubeqa) for life and that my case was challenging since the drugs seemed to work on lymph system but not on bone and a couple of genetic muts made future treatment challenging as well. Classified me as mCRPC and told me he was retiring in 5 days. Ordered 6-week blood work and I wished him well in retirement. Went to check out and my next follow up appt was scheduled with a PA. Since my case is so challenging, I'm pretty sure there should at least be an MD after the name of whoever I see for follow-up so I already made the call to oncology and gave myself my own referral. Our medical system confounds me at times. Had to give myself my own referral for SBRT back in April too. Sheeesh... I feel bad for folks who just let it go.
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