Can I do more/should I be concerned? PSA got down, PSMA PET/CT scan shows reduced tumor burden - BUT some is not and one increased........

[45yrsDenmark]

Diagnosed 7 months ago. I am on Eligard + Zytiga + got RapidArc radiation (20x 3Gy whereof 13x included 3 bone mets in pelvic area (which was controversial here in Denmark that I got that !!). PSA steadily decreased: from 88 - 32 - 6.0 - 3.0 - 2.1 - 1.3 - 0.81 - 0.71 - 0.76 - 0.47. So I am still hormone sensitive. With the last PSA of 0.47 ten days ago (2.5 months after finalizing radiation) I also got a PSMA PET/CT scan. It showed mostly reduced cancer activity, a couple of lymf nodes no longer showed activity... also one of the bone mets didn't show activity... One lymf node showed the same activity.. but one rib (costa 8) which was only a shadow during my PSMA-scan at diagnosis is now clearly active.. so it increased and what they back then wasn't sure if it was a metastasis or not is now sure.. it is... So even though it seems that my treatment is working "OK", I am thinking if I should be concerned and/or if more could be done:

1) The increasing rib metastasis - can anything be done to try hit on that? It is increasing even though my PSA is quite low.. Can it spread to other places?

2) My prostate still show activity in the caudal (lower?) part. I also still suffer from problems urinating.. I thought that the prostate would be "destroyed" by the radiation.. also to avoid "distance-controlling" of the mets from the prostata itself which I heard could be a hypothesis.. Is that an issue to be concerned about? Wouldn't it have been better to remove it? Why is there still activity?

3) Why is my PSA that low, when there is still cancer activity in increasing activity frmo the rib and some mets are still as active as during diagnosis? Seems like I have at least one increasing met (the rib) even though the PSA is decreasing? Does that makes sense?

4) I am getting 2x5mg prednisone with the zytiga (since I started)... I read the Lattitude study uses only 1x5mg only.... Any rationale of why I get twice the dose used in the Lattitude?

Thanks.....

[Magnus1964]

You should be able to get salvage radiation to any spots distant from the prostate area. You're showing great responses to treatments. So there are many other ADT drugs available.

Have you been tested for genetic anomalies? If positive you would eligible for PARP inhibitors.

[45yrsDenmark in reply to Magnus1964]

Not tested yet.. They didn't want to.. that is.. my urologist didnt want to.. the MOs said yes.. so I might get that gene-test within some time...

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Maybe like I , he wasn’t a candidate?

[Tall_Allen]

What you have done by irradiating metastases is what is called "treating PSA." It is controversial everywhere (not just in Denmark) because it has not been proven to increase survival or delay progression (as you just learned). Your larger metastases are the source of most of your PSA. When you zapped them, you eliminated the PSA they produce and your serum PSA decreased, giving you the illusion that you are still hormone sensitive, and some of your cancer may still be (castration resistance is a spectrum). But the new metastases prove that you are castration resistant.

(1) Think of metastases as the morels that show up under a tree. The mycelium of fungus is all throughout the soil, and picking the morels will not destroy the fungus - new morels will always pop up. The only way to seriously set back the cancer is with systemic therapy - chemo, hormonal, immunotherapy, radiopharmaceuticals and others.

(2) Radiation of the prostate takes time to kill off all the cancer there. It took me about 4 years after prostate radiation until the cancer was all gone. Meanwhile, it can still show up on a PET scan, but it can't grow. It also irritates the tissue for some time. Those urinary side effects usually disappear within the first year. You can take an alpha-blocker (like Flomax) to diminish frequency/urgency until they go away. My peeing is now better than ever.

(3) The therapy you've had eliminated the kind of prostate cancer that produces a lot of PSA first, leaving behind the type that is more hormone resistant and produces less PSA. Docetaxel may diminish the emergent type. You may want to biopsy your new bone met.

(4) The lower dose is for hormone-sensitive PC; the higher dose is for castration-resistant PC. Prednisone has an independent anti-cancer effect, until the cancer becomes resistant to it. The important thing while taking Zytiga is to monitor BP, potassium, and signs of edema. Because you have new metastases while taking Zytiga, it may be time to try something else anyway.

[45yrsDenmark in reply to Tall_Allen]

Won't it possibly work to radiate that rib bone met (which was probably there from the beginning - since there was a shadow - and didn't got decreased on the ADT/Zytiga) and get rid of it or slow down progression? And radiate the lymph node too that still has the same activity? Those 2 mets are the ones that didn't either disappear or got decreased activity... Chemo already now after just 6.5 months of ADT and 5.5 months of Zytiga and 2.5 months after radiation sounds maybe too early on my ears??? Wouldn't radiation be a better first option? Don't know if they can (or want) to biopsy those mets. I will for sure call them again tomorrow and I am also now at this point working on a 2nd opinion...

Btw - Don't castration resistant cancer produce PSA which is detected in the serum? Or did I read you wrong?

[Tall_Allen in reply to 45yrsDenmark]

There's no evidence that it "works," or that it is "a better first option." Maybe there is some benefit, but there is so far no evidence of that.

Early chemo, on the other hand, has been proven to extend survival in men newly diagnosed with metastases. Side effects are lighter when used earlier too.

"Btw - Don't castration resistant cancer produce PSA which is detected in the serum? Or did I read you wrong?" You read me wrong.

[Doseydoe in reply to Tall_Allen]

TA, your comments ring true with my situation. ADT and Docetaxel has lowered my PSA to 0.1 but a recent biopsy from the PCa in my bladder revealed active cancer that stain negatively for PSA. Therefore I am going back for more chemo to go on the offensive. I'm learning that PSA is an indicator and not a true measure of the status of my PCa.

[Tall_Allen in reply to Doseydoe]

Did they also stain for androgen receptors? If not, ask for it. The reason I ask is that there is a clinical trial for "double negative" (PSA- and AR-) prostate cancer at SCCA:

clinicaltrials.gov/ct2/show...

[Doseydoe in reply to Tall_Allen]

There is no mention of androgen receptors. It does state that the tissue stains positively for NKX3. 1 and prostatic acid but negatively for PSA, Gata3 and p63.

[Tall_Allen in reply to Doseydoe]

If they have the tissue, maybe they can stain for AR and PSMA?

[Doseydoe in reply to Tall_Allen]

Thanks TA, I'll discuss it with my Oncologist. He has mentioned Zytiga and Xtandi as possible future treatment options.

[45yrsDenmark]

They said that it was not an option for me to remoce it.. .. It had spread out to everything surrounding it apparently....

[Hidden in reply to 45yrsDenmark]

I was the same. ✌️

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Vacation & remission ! Fantastic amigo .. I’m proud of you . Shalom🙏

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🙏