Please opine... : Hello brothers!...My... - Advanced Prostate...

Advanced Prostate Cancer

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Please opine...

GSDF profile image
GSDF
5 Replies

Hello brothers!...My latest PSA is down to 1.06 down from last months 1.25. I'm very happy it's going in right direction again but was hoping that by now, after past year + on Firmagon, and then Orgovyx and Xtandi it would have broken the undetectable zone... So I went to oncologist today and I asked for a psma pet scan but he said not needed. I'm just curious of why PSA going down so slowly. He said be happy it's going down and said other scans might be helpful but psma not needed at this point....

So he ordered a standard bone scan and a CT scan.... I asked for DX bone density scan too and he again resisted, saying one is not necessary.... I insisted, telling him I'd like one to at least establish a baseline... He said "yeah, I guess we could do that"... I felt like saying "glad I thought of that, huh doc?" but I resisted...

Do you guys think he should have given me a psma (of which I've never had) instead of a CT and regular bone scan?.... I'd like to see in clearest imagery of what's going on inside me at this point and what may be reason PSA is moving down so slowly....

Blessings to you all and hope you're all doing well.... 🙂

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GSDF
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5 Replies
Tall_Allen profile image
Tall_Allen

How would your therapy be different?

GSDF profile image
GSDF in reply to Tall_Allen

Well, I thought the PSMA PET scan was state of the art and much more accurate than a CT?

tango65 profile image
tango65

IMHO your PSA is stable around 1. There is not a real difference between 1.06 and 1.25.

If you want to investigate why is going slowly, request a direct biopsy of the mets if possible , to do histological, IHC and genomic studies. This information may be useful to determine if the cancer may be susceptible to treatment with Olaparib, keytruda or other possible treatments.

RMontana profile image
RMontana

Here is the latest thoughts from Europe on CT Bone Scans...they do have utility.

healthunlocked.com/active-s...

I would get a PSMA PET at some point and use your judgement; PSA of 2.0 is the threshold but it assumes you dont already have MET. As you stated, I would be glad to know there is nothing there even at low PSA's. From what Dr Calaise at UCLA told me personally, if you have a tumor and its sleeping because you are on ADT it will have surface antigen plenty to which the PSMA PET will bind; you will see it on a scan. I had my PSMA PET done at PSA of 0.02 and at UCLA they told me that nearly all their patients are on ADT when they have a scan. This is my experience. In fact, get and push for whatever testing you think you will benfit from; try to not take NO for an answer...here is a map of what is out there...

healthunlocked.com/active-s...

PS get baselines on everything, at each step of your journey...how will you know you are getting better if you dont know where you started? Its like calling for an UBER and not knowing where you are; the taxi will never come. Here is my 'woulda-could-shoulda' list of things I will do differently in my next life...take from it what you think fits your case. TNX

healthunlocked.com/active-s...

Grandpa4 profile image
Grandpa4

I don’t see any advantage to a PMSA scan. Remember that the PSA never goes to zero. It often goes below detectable but it is still there. As long as it is not going up you are responding. Enjoy every day and don’t let worry about your future ruin one day of it.

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