Mystery PSA

Steve,
Welcome to the Forum, though I'm sorry you're here.

I know something about the disappointment you may have experienced when surgery and radiation didn't get all the cancer. I also bottomed out at a PSA of 0.1, followed by a steady PSA increase. Your PCa was evidently "systemic" in some way prior to your treatments. The scans don't always detect what might be called "micro-mets."

It's good that you have a medical oncologist on board. He/she likely will direct the management of your PCa. The RO may be able to eventually spot radiate bone mets if they become visible on scans.

Keep in mind that we are not doctors and I am just speaking from my experiences. It would be best for you to see what your doctors say and not assume that anything I say is how things really are.

My question would be when can I get a 18F-fluciclovine PET scan. Could be your cancer is not PMSA positive.

Steve_in_MD said...
Prior to salvage radiation, I had a whole body Fluciclovine PET. Abnormal uptake at the prostatectomy site. No high suspicion lymph node or separate disease.

Steve,
Since your prostate bed (and lymph nodes?) were radiated, the PCa has escaped to elsewhere, which you seem to be well aware of. In my case, there was a small suspicious spot on a rib and one on a hip fossa. Interestingly, the four bone scans I've had prior to going on ADT have never shown an increase in size, even after my PSA went pretty high after primary treatments. The radiologists' impressions were always that these areas were not PCa mets. My medical oncologist (MO) treated as if the spots were mets. No matter really, the cancer is somewhere.

In my original post I didn't want to say too much, but as you said, you may be headed to lifetime ADT. You already know what that's like, but it's doable. If it comes to that, Lupron plus a 2nd gen anti-androgen can keep you going for a very long time.

Let's see what the docs say. Please let us know.

" PSMA PET (Pylarify): Focus of PSMA avidity in the left scapular body, "

Pylarify scans are one of the best scans there are. It is a type of PSMA scan.

It sounds like it's in your shoulder blade. And if that is the only place it has been found, then radiation MIGHT be curative.

Hello, Steve ~

Wondering if your medical team has suggested a new treatment plan?

Would it be worth trying a course of ADT & see what impact that has?

Have medications such as ZYTIGA or XTANDI been discussed?

Just thinking aloud ~ wanting all the best for you ~

CYCLONE ~ # Iowa State University

Steve_in_MD - My wife just had "eyes-to-thighs" PET/CT scan that included the shins and feet for the first time. All scans done at the University, same doctor, etc. She usually brings a disk home for me to load up and review.

I see no changes from previous scans but what do I know. However, I notice an anomaly in her left shin muscle that seemed to start at bone then extends into the muscle at least 6" (even I can see that). I gave her a picture of it which she took to her PA meeting. I also printed a picture of something the radiologist noted that had not been noted in the previous scans to take with. Her PA had no answers to the shin issue or why none of the other scans noted the one new item. She was pretty sure it was muscle strain of some sort but sent a note to the radiologist to review and comment on my finding. She reminded my wife that she should lay low and not do anything physical for a couple of days before the PET scan since it flags all sorts of stuff with minor strains and injuries of one sort or another, etc.

My only point is that it may be a good idea to get second opinion on the scans given the difficult nature of interpreting them. I am starting to lose some trust in these radiologists who are going through many scans in a day and missing stuff that other radiologists see. I have had it happen with my scans as well where one radiologist just says no cancer or no hernia observed and the next radiologist describes my life history of abdominal issues. We have no trouble discussing the variability of urologists and oncologists then just trust the scans that they base much on. And yes, they sometimes include feet but I have no idea why and when.