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One year PO and now it seems I'm Stage 4 :-(

Posted by im62at2024 @im62at2024, Apr 30 8:23pm

Hi, It's been a while since I posted on here so here goes a quick review of my past and my latest issue.
I had been under active surveillance for almost 4 years since 2021 with PSA peaking at 5.8 and then slowly decreasing PSA numbers and I had biopsy Gleason scores of 3+3=6 back in 2021. I was on Finestaride and Flowmax during the AS. Then in Oct. 2024 my PSA jumped 30% from 3.6 to 4.6 and they did another biopsy in Jan 2025 and I had Gleason scores of several cores at 4 + 3 = 7 (Grade group 3) and one at 4+4=8/10, (Grade group 4). My first PET scan in late February 2025 showed no spread. and genetic testing in 2021 said not likely to progress. I had what was supposed to be routine prostate removal via Da Vinci method last May. The surgeon said he had to get fairly aggressive with the right side whatever that meant and he spotted a cyst on my colon and made the decision to remove it. The cyst and lymph nodes were clear. My final prostate pathology after surgery was T3a. I had gotten two good PSA tests of < 0.1 in August and November. Come Feb. I was at 0.2 and 4 weeks later I was at 0.3. They ordered a PSMA PET-CT scan and found the it has metastasized into my right arm humerus bone, I had noticed some pain in that bone as far back as this past January but really didn't think anything about it.

The part of the PSMA-PET scan we are concerned with:
BONES & SOFT TISSUES: Sequelae of prior cervical spine ACDF and posterior instrument fixation with interbody disc spacer in the lower lumbar spine. Focal tracer uptake significantly above background associated with ill-defined sclerosis in the proximal right humeral diaphysis, compatible with metastasis (SUV max 28, image 82). Low level tracer uptake associated with the musculature of the right shoulder, favored reactive in etiology.

I don't personally know anyone that's had Prostate metastasis in the bone. I have my first visit with an oncologist next week with a Dr. Gregory Mitro and so far from asking around I've only heard good things about him. I have a short list of questions for him but I'm open to suggestions as to what to ask and what to expect. It's strange that it would travel all the way to an arm bone.

I really didn't expect to see myself in this position as I've always stayed on top of my health fairly well and have PSA tests going back over 10 years.

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Profile picture for deccakid
deccakid | @deccakid | 11 hours ago
In reply to @im62at2024 "@deccakid Yeah that SUV of 28 had me a bit rattled after looking up exactly what..." + (show)
Profile picture for im62at2024 @im62at2024

@deccakid
Yeah that SUV of 28 had me a bit rattled after looking up exactly what it meant but everyone where I had my radiation done seemed very confident that they could take care of it. Right now my RO wants me to stay off any and all ADT he said he wants to see what my PSA does. He said I've looked over your labs and said with all the clear margins, lymph nodes and seminal vesicles from my RP last year it could possibly be the only recurrence you'll have. My concern is that the final pathology was T3a and from what I've looked up that means it had broke through before it was removed why it didn't attach itself in the pelvic area no one knows or why it went for my humerus bone no one knows for sure. He said if my PSA rises again we'll do another PET scan and see if we can find it. He said if it doesn't show up on the PET scan the most logical place it would be is the pelvic bed and we can radiate there. He said if it levels off and remains stable that he wouldn't recommend ADT. Yes he said ADT can help keep it in check but also can mask it to a degree. He said the quality of life can be severely affected in some men once you start ADT. I see my Urologist this Thursday for what I assume is my first PSA test since finishing my 5th round of SBRT Monday. There's still some pain in that bone but it's not as bad as it was. He said if my Urologist really tries to push the ADT on me to have him call him directly. They've been in communication with each other already about my case.

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@im62at2024
Understandable...Yes, ADT has had me in a quandary once the cancer metastasized....Mine has shown up in the spine twice now and concerned about the, albeit low SUV, hot spots back in the prostate itself...thus the decision to go with Pluvicto rather than Xofigo.
The combination of the Pluvicto and the ADT (firmagon) has me a real mess. I've chosen to suspend the ADT whilst on Pluvicto, a bit to my Oncologist's chagrin, but the CV issues have been much more prominent lately...shortness of breath, high ventricular rate, PVCs. I know the effort is to overwhelm the cancer cells, but not to this extent on the rest of the body. T has been consistently <20...and I believe I read a report that it can actually be good for the T to rise for a while, thus allowing the ADT to be more effective if necessary. ('Sorry I didn't save that report to share).
You named a good topic, "Quality of Life"...I could debate this..Of course I'm grateful to be alive, but being in bed most of the time whilst my body is overwhelmed by the treatment questions QOL....but I will continue the Pluvicto (2 infusions so far) for the time to monitor PSA and most likely a scan after 4 treatments.
Hang in there and keep us posted. Blessings to all!!

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Profile picture for heavyphil
heavyphil | @heavyphil | 3 hours ago
In reply to @im62at2024 "@deccakid Yeah that SUV of 28 had me a bit rattled after looking up exactly what..." + (show)
Profile picture for im62at2024 @im62at2024

@deccakid
Yeah that SUV of 28 had me a bit rattled after looking up exactly what it meant but everyone where I had my radiation done seemed very confident that they could take care of it. Right now my RO wants me to stay off any and all ADT he said he wants to see what my PSA does. He said I've looked over your labs and said with all the clear margins, lymph nodes and seminal vesicles from my RP last year it could possibly be the only recurrence you'll have. My concern is that the final pathology was T3a and from what I've looked up that means it had broke through before it was removed why it didn't attach itself in the pelvic area no one knows or why it went for my humerus bone no one knows for sure. He said if my PSA rises again we'll do another PET scan and see if we can find it. He said if it doesn't show up on the PET scan the most logical place it would be is the pelvic bed and we can radiate there. He said if it levels off and remains stable that he wouldn't recommend ADT. Yes he said ADT can help keep it in check but also can mask it to a degree. He said the quality of life can be severely affected in some men once you start ADT. I see my Urologist this Thursday for what I assume is my first PSA test since finishing my 5th round of SBRT Monday. There's still some pain in that bone but it's not as bad as it was. He said if my Urologist really tries to push the ADT on me to have him call him directly. They've been in communication with each other already about my case.

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@im62at2024 It all boils down to a guessing game…very frustrating!

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