ADT and rising PSA

Posted by mjp0512 @mjp0512, 2 days ago

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!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for mjp0512 @mjp0512

@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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@mjp0512

Do you collect Inonotus obliquus in the forest from living or dead trees?

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Profile picture for denis76 @denis76

@mjp0512

Do you collect Inonotus obliquus in the forest from living or dead trees?

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@denis76 - Living. Quite a few stands of Birch not far away.

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Profile picture for mjp0512 @mjp0512

@denis76 - Living. Quite a few stands of Birch not far away.

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@mjp0512

Have you tried drinking this mushroom's vodka tincture?

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Profile picture for denis76 @denis76

@mjp0512

Have you tried drinking this mushroom's vodka tincture?

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@denis76 - No, I'll keep my booze single malt.

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@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.

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@denis76 mentioned "I've heard that if you treat cancer aggressively, it becomes aggressive itself."

Just the opposite, at least according to the latest thinking on metastatic prostate cancer. They used to treat it gently and incrementally: trying one treatment until it failed, then escalating to the next (somewhat stronger) one, etc.

These days, the leading-edge thinking is shock-and-awe: hit metastatic prostate cancer aggressively, up front, as many ways as you can, all at once. That's the philosophy underlying doublet and triplet therapy, MDT and PDRT, etc. Researchers at top cancer-treatment facilities like our host Mayo in the U.S., Princess Margaret and Sunnybrook in Toronto, etc., have been at the forefront of that movement, and so far, recent major phrase III trials have supported them.

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Profile picture for denis76 @denis76

@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.

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@denis76
Must be the first time I have heard that. There have been Quite a few cases in this Mayo forum where people have gone aggressive as could be on their prostate cancer, and it helped.

People get triplet therapy to try to stop the cancer in its tracks and it works for a lot of people. It doesn’t work for everybody, Some prostate cancer cases can’t be stopped, not because people were too aggressive. It’s because their cancer is too aggressive..

I know someone that actually got triplet therapy when he didn’t have it recommended, but he wanted to be aggressive so that he didn’t have to worry about the future.

Normally, however, people get aggressive therapy because they have an aggressive case.

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Profile picture for Jeff Marchi @jeffmarc

@denis76
Must be the first time I have heard that. There have been Quite a few cases in this Mayo forum where people have gone aggressive as could be on their prostate cancer, and it helped.

People get triplet therapy to try to stop the cancer in its tracks and it works for a lot of people. It doesn’t work for everybody, Some prostate cancer cases can’t be stopped, not because people were too aggressive. It’s because their cancer is too aggressive..

I know someone that actually got triplet therapy when he didn’t have it recommended, but he wanted to be aggressive so that he didn’t have to worry about the future.

Normally, however, people get aggressive therapy because they have an aggressive case.

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As I've mentioned before, my treatment was unusually aggressive, even by leading-edge standards, because it also included surgical debulking of the metastasis in addition to the regular MDT, PDRT, and doublet therapy.

There is some research showing that surgical intervention for large metastases with oligometastatic PCa reduces recurrence risk even further, but it's not standard of care yet, especially if the metastasis is somewhere tricky like the spine: the risks are just too high (as the old surgeon joke goes "The operation was a success, and the patient died").

I got that intervention because I was at risk of permanent paralysis or death if they *didn't* operate immediate. Fortunately, there was a top spinal specialist on call that night, he drove in from home at zero dark thirty with no notice and no opportunity to plan, and not only was the 10+-hour operation a success, but I did wake up again. 🙂 So ex-post, knowing that I didn't die on the operating table, it was a good choice for me for cancer-control as well as mobility, but there was no way to know that ex-ante.

All my cancer treatments:

October 2021
- surgical debulking of the metastasis on my spine
- 20 gy of post-op radiation to my spine (MDT)
- ADT (first Firmagon, then Orgovyx) -- ongoing to present
- ARSI (Erleada) -- ongoing to present

May 2022
- 60 gy of radiation to my prostate (PDRT)

As of May 2026, I'm still NED, so in my case, the aggressive approach seems to have paid off, but as @jeffmarc mentioned, everyone's cancer is different.

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Profile picture for mjp0512 @mjp0512

@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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@mjp0512 Man, what a shit show. So that spinal lesion definitely was cancer from the get go and was not spot radiated with SBRT…
But even your prostate, which WAS radiated is still active? That is a real new one me, for sure. You may have no choice other than docetaxel at this point, as others have pointed out.
Pulling for you, man!🤞🤞

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Profile picture for heavyphil @heavyphil

@mjp0512 Man, what a shit show. So that spinal lesion definitely was cancer from the get go and was not spot radiated with SBRT…
But even your prostate, which WAS radiated is still active? That is a real new one me, for sure. You may have no choice other than docetaxel at this point, as others have pointed out.
Pulling for you, man!🤞🤞

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@heavyphil - Thanks Phil. Yea...I'm not looking forward to the GUO visit on 6/2. Pretty sure chemo's on the way unless something popped in the genetics I don't know about yet.

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Profile picture for mjp0512 @mjp0512

@heavyphil - Thanks Phil. Yea...I'm not looking forward to the GUO visit on 6/2. Pretty sure chemo's on the way unless something popped in the genetics I don't know about yet.

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@mjp0512

And after the biopsy, did they give you docitaxel?

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