Advanced recurrent PCa, rising PSA, 2 negative PSMA PET Scans

[Ddl123161]

Here's my story. In the summer of 2014 I was diagnosed with PCa, PSA 10.1, 4 cores of 12 Gleason of 3+4. My chosen treatment was Brachytherapy which I had done in Sept of 2014. Fast forward to the summer of 2018 with a rising PSA (approx 3.0), it never went below 1.1, I was diagnosed with recurrent radiation resistant PCa. Luckily, I was able to get a Pyl 18F PSMA scan at Stanford which showed it was still only in the left side of the prostate. My chosen treatment for the recurrence was Cryo as I could not have any further radiation treatment. I also had ADT for 3 months prior and 3 months after the Cryo. Cryo was done Dec 2018. During ADT, PSA was essentially undetectable. since going off ADT in Mar of 2019, I have had rising PSA. During the summer of 2020 my PSA was 2.5, so I had a Ga68 PSMA PET scan at UCLA which came back as negative, no PCa detected. So we waited and kept doing blood work. In Apr of 2022, my PSA had reached 3.5, so we scheduled the new FDA approved Pyl 18F PSMA PET scan. It also came back negative. So, we then scheduled a 3T MRI with rectal probe which I just had done the end of June 2022 at MD Anderson in Houston. It also came back as negative and no PCa found. At that time my PSA was 4.5. Now it's one month later and I had a PSA blood test done at the end of July 2022, PSA went up to 5.5. So I'm perplexed. None of the advanced testing can see any signs of PCa so what do I do? If I go back on ADT, which I'm not really wanting to do, will that just cover up what ever PCa may be there? It will definitely make it no show up on scans. I haven't talked to my Prostate Oncologist as of yet as the test results only came out this past Saturday. But I'm pretty sure due to the large jump in one month they are going to want to be proactive with the ADT at this point. Anyone have any experiences like this? Thanks in advance.

[Tall_Allen]

Try a different PET scan. NaF18 shows twice as many bone metastases as PSMA.

[Ddl123161 in reply to Tall_Allen]

Are you sure about that? My understanding is the 18F Pyl (Pylarify) PET CT Scan is about as good a scan as you can get for PCa these days. Also I found this article.

digirad.com/why-you-should-...

Do you have a link to something that shows NaF18 is better?

[Tall_Allen in reply to Ddl123161]

Yes, I'm sure. PSMA is the best overall, especially at low PSA, but not the best for bone metastases. FDG is best for later stages of progression.

In this trial at NIH, NaF detected 373 bone tumors vs 191 for Pyl in the same 61 men who had metastatic bone tumors on either scan:

jnm.snmjournals.org/content...

[lokibear0803 in reply to Tall_Allen]

Would you look for other markers suggestive of bone mets (e.g bone-specific ALP) before suggesting an NaF18?

[Tall_Allen in reply to lokibear0803]

Good idea!

[lokibear0803 in reply to Tall_Allen]

Other than B-ALP, which would you go for?

I understand that general ALP correlates with B-ALP, i.e. rising ALP predicts rising B-ALP. Do I have that right?

Thanks, TA.

[Tall_Allen in reply to lokibear0803]

just bone alp

[Ddl123161 in reply to Tall_Allen]

Is that the same thing as Bone Alkaline Phosphatase? I have that on my list to talk to the oncologist about.

[Tall_Allen in reply to Ddl123161]

yes

[tango65]

You could also request a 18F FDG PET/CT since most PC metastases use glucose and it could identified metastases in the bones and outside the bones. It could complement the NAF18F PET/CT.

Most oncologists will not do any treatment unless there is evidence of radiographic progression of the cancer.

[MateoBeach]

Yes, the concern is how many bone metastases you have and where. (Are any threat for spinal or axial fracture and should be irradiated?) in addition to F18 NaF PET, I would suggest whole body CT to also see viscera, etc.With bone mets, assuming confirmed, should consider and discuss bone protecting regimen such as Xgeva.

Also with metastasis confirmed makes you eligible for other treatments such as Provenge or, perhaps, Pluvicto. And also more clinical trials that might be of value.

[Spyder54]

Just a thought. Guys above are all much more qualified with higher IQ’s. You mentioned you still had a prostate after failed radiation and went to Cryo for the left lobe. Just as a long shot, we all know that Prostititis will cause high PSA numbers. Is it possible in the half Prostate you hv remaining that you have Prostititus (an infection)? This can be cured with antibiotics. A close buddy came to me after he knew of my diagnosis saying his PSA was 15 but biopsy 12 needles all negative. 3 months of antibiotics returned him to PSA 1.5. Just an out of the box thought to your peculiar 3megative scans all w rising PSA. Best, Mike

[lokibear0803 in reply to Spyder54]

I agree that prostatitis is always something to rule out in a situation like this. My understanding is that it will cause a continued rise in PSA, but not a fast one. Unfortunately I can’t quantify that, other than in my case with current DT of maybe 2 months, my MO doesn’t recommend antibiotics.

I welcome any differing views, evidence, etc on this.

But if someone is willing to try a course of antibiotics and accept any SEs, that can be at least diagnostic if not definitive, right?

[Ddl123161 in reply to lokibear0803]

After the Brachy in 2014 and then the Cryo in 2019 on the left half, they don't seem to think I have much prostate tissue left, but I will definitely ask the oncologist about this. Thank you!

[OldGuysRule]

I’m new to this site. Without realizing, I wrote my reply to you as a post. Anyway, I have advanced stage 4 with bone involvement so, with that as a back drop, here’s my humble opinion. If nothing is showing up on scans or mri’s, I’d wait and watch. ADT is a heavy hammer for something that isn’t showing it’s ugly head.

[Seasid]

I would try ADT. If the PSA drops than it is a cancer. It is cheaper than the endless PET scans, and no radiation. If the PSA stay the same than try antibiotics.

We don't know how you feel, your symptoms, pain, ALP etc. It is difficult to recommend anything. You could have rising PSA if you have micromets. They are just simply not visible on the PET scans. I wouldn't wait and see without therapy just because the PET scans don't show anything. One Norwegian oncologist prescribed Nubequa for rising PSA without a visible tumor. The PSA should drop with the treatment if you have a cancer.

[Seasid in reply to Seasid]

If your PSA is above 5 then it is a good opportunity to take a liquid biopsy before starting ADT.

Don't miss that window of opportunity now as this is maybe the only time to find out if you have an actionable genetic mutation of your current cancer to help you with the best future treatment.

You still don't have to use the big guns as your cancer may mutate further.

Most importantly you need as much information about your cancer as possible with the liquid biopsy.

It is still too early for big guns, but don't delay neither the liquid biopsy nor the introduction of the ADT.

You need a competent oncologist as we may don't know all the details so don't rely on the advice from this post. You have to discuss it with your medical oncologist.

[V10fanatic]

I'm in the same boat. My PSADT is running at about 3 months, yet my Pylarify came back clean yesterday. Looks like my ADT vacation is coming to an end. The last time I showed BCR my PSADT was 6 months, and my PSMA scan picked up 4 medium sized mets which I treated with SBRT.

Is it reasonable to assume that with no detectable mets showing up on this scan that I actually have a much higher burden of micro-mets which is shortening my PSADT?

My PSA has tracked as follows recently:

<.06 11/9/21

.22 2/16/22

.44 3/31/22

.75 5/23/22

1.1 7/6/22

[FJ8a]

Hello Dd123161 , You may want to get a brain mri , last year on September 29th I had an episode thinking that I was having a stroke, my right side went numb I lost my balance and fell … I had my cell phone on my hand I thought it was the end for me but after about 15 or 20 seconds I was able to redial my daughter’s number so she could call 911 and come to my house and secure my dog , it would not let the paramedics in the property … they did an mri and found a tumor told me it was meningioma the brain surgeon said he was 99.9% sure they took out the tumor and it was brain metastasis (prostate cancer) I’m being treated at MDACC (Houston) just got home they gave me over an hour of gamma knife treatment