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PSA rising and at a crossroads
Hi everyone,
I’m new here and really appreciate any thoughts or experiences you’re willing to share.
I’m 69 and in pretty good health overall. I’ve tried to stay active and proactive through all of this.
I was first diagnosed back in 2011 (Gleason 7) and had my prostate removed. Everything seemed fine for a long time.
Fast forward to late 2024, my PSA showed up high again (36), and scans revealed the cancer had already spread to my bones—pretty widespread.
I started on hormone therapy with Orgovyx + Nubeqa, and it worked really well at first.
My PSA dropped all the way down to 0.09, which felt like a big win.
But over the past few months, it’s been creeping back up and is now around 2.5, even though my testosterone is still very low.
From what I understand, that likely means the cancer is starting to figure out how to grow despite the hormone treatment.
I just had a new scan, and here’s where it gets a little more complicated:
The cancer is still only in my bones (no organs)
Some spots are clearly active again, and a few new ones showed up
But the confusing part is:
Some lesions show up on the PSMA scan
Others really don’t
From what I’ve been told, that “mixed” or low PSMA expression might limit some of the newer targeted treatments.
Right now, I feel pretty good overall. Still active. Bloodwork looks fine. Just some hip discomfort.
Earlier on, radiation (SBRT) was mentioned as a possibility if there were only a few active spots.
But after the latest scan, my doctor is no longer recommending radiation, likely because of the number/distribution of lesions.
My doctor is now talking more about:
Possibly a clinical trial (something like an immunotherapy or T-cell engager)
Or moving into other next-step treatments
So I thought I’d ask here:
Has anyone had mixed or low PSMA expression like this?
Did that affect what treatments worked for you?
Did anyone get told radiation wasn’t a good option—and what did you do next?
Any experience with clinical trials or immunotherapy in this setting?
I’m trying to stay ahead of this while I still feel good, and make smart decisions early rather than waiting.
Really appreciate any input. I know everyone’s journey is different, but it helps a lot to hear real experiences.
Thank you 🙏
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I guess I should add that I am high volume metastatic with multiple lesions. Mainly spine, ribs, and ilium, but also sternum, maximal face bone, femur, etc.
I started out at MD Anderson then went to Houston Methodist to see Dr. E. I am currently transitioning to OHSU.
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2 Reactions(Layperson here)
I don't think external-beam radiation would be recommended for high-load, castrate-resistant metastatic PCa like yours. It would more likely be "triplet therapy": add chemotherapy while continuing your current Orgovyx and Nubeqa (to keep suppressing the part of the cancer that hasn't become castrate-resistant).
Dr Kwon at Mayo has some videos about triplet therapy, IIRC, and it's frequently discussed here in the forum.
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3 Reactions@northoftheborder has zeroed in on what is usually done with the situation like yours?.
If everything is strictly in the bones radium 223 (Xofigo) Is one treatment that works for a lot of people.
I do not understand why your doctor has not discussed chemo or Pluvicto With you. They are the standard along with the drugs you are already on.
Any of those three treatments is sort of standard if you have more than five metastasis.
Where are you going for treatment? Have you spoken with a medical oncologist about your treatment?. In your case, a Genito urinary Oncologist would be the preferred type. They specialize in prostate cancer Unlike most medical oncologist, who work with many types of cancer. It might make a lot of sense to get to a center of excellence to get further treatment. It could be you are already at one, but a second opinion could not hurt at this point.
I was a Gleason seven in 2010 and had surgery, But it came back 3 1/2 years later because I have a hereditary problem BRCA2. My cancer has come back four times and I’ve had a metastasis on my spine zapped, but fortunately there was only one. With the right treatment, he could have many more years please do get a second opinion.
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4 Reactions@jeffmarc thank you for the suggestion. This is exactly why I’m reaching out.
We discussed triple therapy early on when I was at MD Anderson.
My response to the ARSI hormone therapy was so strong, we didn’t think it would be worth the risks. It’s only been the last three months that my PSA has started to takeoff.
I was with Houston Methodist and Doctor “E” until three months ago. She has moved and I am following her to OHSU KNIGHT CANCER INSTITUTE. It is taking her a few months to get settled in at OHSU.
I’m sure in my upcoming consultation, once she sees the new labs and PSMA scan, she will address that option.
I was hoping to enlist in some sort of a clinical trial. Since once you’ve done chemo, it starts to change those options.
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1 Reaction@herbertlancaster
You can’t get a better doctor than Dr. E. She will definitely give you the treatment your situation calls for.. As you mentioned, triple therapy was discussed before and that is frequently what is given when there’s multiple Metastasis.
Hopefully, you can get a treatment That will manage your cancer for many years.
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