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.

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

Profile picture for Jeff Marchi @jeffmarc

@im62at2024
I like what they’re saying, but I’m wondering why you’re not getting another PSMA PET scan.

Don’t mention how high your PSA is, but if it’s over about .5 you should get a scan right now to see if there’s anything showing. That way, the RO has something to target. Your last pet scan is too old and doesn’t represent what has happened since you have had BCR.

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@jeffmarc sensitivity of the scan could be a factor for when the doctor wants to do the scan “ the sensitivity of PSMA-PET with the PSA level of less than 1, is somewhere in the range of 60% and in PSA above 2, the sensitivity is almost in the range of 95% to 97%,” from Urology Times.
We waited and I’m more confident of the results.

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Profile picture for zmarkv @zmarkv

@jeffmarc sensitivity of the scan could be a factor for when the doctor wants to do the scan “ the sensitivity of PSMA-PET with the PSA level of less than 1, is somewhere in the range of 60% and in PSA above 2, the sensitivity is almost in the range of 95% to 97%,” from Urology Times.
We waited and I’m more confident of the results.

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@zmarkv
Some people have very aggressive cancers and don’t want to wait Until their PSA hits 2.

I know somebody who was having their PSMA Pet test every three months, even though their PSA was only .2. The doctor felt that for them it was important to catch whatever came up, soon.

Because of my BRCA2, I would never want to wait till my PSA hit any higher than 1 Before getting a scan.

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