Hello Everyone - I have update my profile with my husband's history. I think it is complete - but here is a quick recap: He was originally diagnosed on January 5, 2022 with a PSA of 1041.5 with mets to pelvic lymph node and bone. He underwent successful Triplet Therapy in 2022. He continued with Lupron and Nubeqa through February of 2023, at which time intolerable side effects led him to go on Intermittent ADT. He was off all meds from Feb 2023 through March 2024 (PSA started rising in August 2023 - but MO essentially watched it until March 2024 before starting treatment with a half dose of Enzalutamide monotherapy).
He still has has prostate and has had no radiation or any other treatment.
My question is related to his PSMA PET Scans. He has had three of them between fall of last year and now.
One in November 2023 when his PSA was 2.68
One in February 2024 when his PSA was between 6.87 and 9.97
And now, one on Sept 20, 2024 when his PSA was 6.56
There are summaries in my bio.
Because all three of these scans have shown no PSMA-avid lesions other than whatever is going on in his prostate when his PSA seems like it should be high enough where something should be shown, I am concerned that maybe his cancer does not emit PSMA.
Is that possible? Or is whatever is present in his prostate alone enough to drive his PSA so high?
I have heard of other men who have negative PSMA PET scans only to have lymph and/or other mets show up only after different types of PET scans were done, and I am concerned that maybe that is what is going on here.
Is there another type of PET we should be asking for at this point?
I should also say that he knows he will likely need to go back on the Enzalutamide after we speak with his MO this week - but just want to be sure that we are not missing anything that could warrant other treatment simply because nothing is really showing up on his PSMA PET scans and would like to know if we should be pushing for a different type of scan.
Thank you in advance for any guidance.
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FaithOverFear104
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Thank you - when my husband was diagnosed in January 2022, we were told that neither of those things were options for him. If things have since changed, his MO has not suggested either thing. I am curious about the study though. I will see if I can find information. Thank you.
FDG PET can locate non-PSMA-avid metastases. But it is likely that his hormone therapy has shrunk all his metastases. That's what it is supposed to do. PET scans only detect relatively large metastases, not all of them.
We are early on in our journey. First year of diagnosis. our medical oncologist is alternating between PET PMSA and traditional CT. He says that PMSA PET doesn’t get detailed and clear images as a traditional CT. He wants to see what is going on with the METs in detail to make sure they are gone. They didn’t show active on his last PET which we are grateful for. My husband has low Mets and had low PSA diagnosis with Gleason 9. We are also going to do a liquid biopsy on his next appointment. You may want to consider asking for this.
I share your concern for PSMA avidity. Over six years I traveled to Europe for two comparative imaging methods not available in the US at that time - Ga68 PSMA PET and Ferrotran nanoparticle MRI. The Ga68 was clear however the Ferrotran identified multiple cancerous pelvic lymph nodes. In my experience further confirmation which of any of available imaging methods will work on an individual basis is difficult to know.
Recently had my fourth PSMA PET - this one Pylarify and 2nd liquid blood biopsy.
The Pylarify contrast agent was clear for prostate cancer however the PET picked up a 2cm liver lesion which has biopsied as metastatic melanoma. And the GUARDANT360 liquid blood biopsy identified non-specific TP 53 mutation; previous year was clear.
Although I have a new metastatic melanoma battle front I will not take my eye off of PC and will be getting another flavor of imaging/contrast agent. Unfortunately, insurance providers resist multiple imaging methods and many docs limit their recommendations and willingness to advocate on our behalf because of their contracts; same seems true for liquid blood biopsy testing.
Since insurance providers resist multiple imaging methods, does this mean you're paying out of pocket or have you found a way around this? Assuming you're paying out of pocket, I imagine you still need to get the prescription for the imaging from your MO? Are they compliant with self-pay or do they push back? Thanks and best of luck.
I did self-pay for imaging in Europe - my private coverage did not cover out of US. My imaging in US has been covered by private insurance and medicare since turning 65. My docs present my case that with PC confirmed in lymph nodes and with uPSA rising, albeit very slowly, annual screening is warranted.
My doc selection process is heavily weighted towards my strong self-advocacy and my thinking out ahead of 'common practices'. This starts with relying on very frequent ultrasensitive PSA testing and <0.010 as best indicator post RP. And since my salvage ePLND taking actions such as imaging and liquid blood biopsies at 0.03 +. Also, as you ask, they have to be supportive of writing orders for me to seek services outside of their practice including self-pay. If a doc says no I do not consult with them.
My oncologist who is also a hematologist (combo I like) fully supports early imaging and liquid blood biopsy testing. This said, he is open to sharing that his medical group biggest imaging volume contract is with Pylarify - so their imaging of choice. When we did Pylarify this past July he agreed if it was clear for PC he would right orders and justification for Medicare for my choice of another imagining method outside of his practice. It was indeed clear for PC but the PET did identify a liver lesion that has been biopsy confirmed as melanoma cancer. I am on road tomorrow in my RV for 2,000 mile drive to appointment with him next week. Although our focus will be on melanoma metastatic finding we will discuss additional imaging for PC. Hope this helps. All the best for your husband - he is lucky to have you.
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