Here’s a good overview of PSMA diagnostics by Dr. Calais, one of the UCLA doctors involved with getting 68Ga-PSMA-11 PET approved by the FDA. It’s a bit on the technical side, but it does show the strengths and limitations of the imaging technique.
My visit to the urologist this afternoon went just as expected, and even a little better.
With the San Diego VA Medical Center being a teaching hospital, it’s rare that I see the same doctor twice. Because I liked the doctor I saw last time because of the conversation we had and the plan that we mapped out together, I specifically requested to see her again this time. Unfortunately, a young resident showed up in her place.
That actually may have worked to my advantage.
Dr. K started the conversation by asking if I had come to a decision as to whether I wanted to do salvage radiation therapy or hormone therapy. I was a bit taken aback by that—”Haven’t we skipped a few steps here, Doc?”—but then I remembered the way that Dr. L wrote up her notes from my visit with her, it would be easy for him to come to that conclusion.
I filled in a few of the blanks with Dr. K regarding our plan to follow up the negative CT and bone scans with an Axumin or PSMA PET scan in hopes of finding the cancer before making the SRT vs. ADT decision. He dutifully reminded me that either or both scans could come back negative, too, meaning that the cancer was still likely in the pelvis or prostate bed.
Interestingly, when we were talking about the merits of the Axumin and PSMA PET scans, he immediately went to, “Why even bother with the Axumin scan; go straight to the PSMA scan.” I didn’t even have to nudge him in that direction. He and I were on the same page.
To his knowledge, though, SD VAMC had not yet referred anyone to get a PSMA PET scan, but he seemed eager to figure our how to make it happen and have me be the first (or among the first) to be referred. He wasn’t even sure where to begin, so I told him.
I opened my file folder that I had with me and pulled out the one-page sheet that I had put together, stepping him through the referral process that UCLA had shared with me. It was all there for him, and he asked, “May I keep this?”
He did admit, though, that he had no idea how long it may take to get approval from the hospital team before he could even ask for the referral, so this may play out over a few weeks or longer. Rest assured that I’ll keep on top of this, asking for periodic updates.
I’m pretty excited that we’re moving in the direction of going straight to the PSMA PET scan, but also recognize there can be a number of administrative twists and turns along the way.
In the interim, we agreed to test my PSA again in early November, keeping on a four-month testing cycle. I’m okay with that while we’re trying to sort everything else out.
We also talked about my incontinence episodes becoming more frequent and more substantial in the last 6 weeks or so. He wanted to rule out a urinary tract infection, so he sent me off for some labs and we’ll see what they yield.
These episodes have put me back in incontinence pads for the last few weeks. Before, a sneeze or a cough would yield a few drops; now, they yield a squirt. Not good.
More to monitor and report on going forward.
That’s it for this post.
This video was released today, and the timing could not have been more perfect. Dr. Scholz does make the distinction between the Axumin and PSMA PET scans, confirming that the PSMA PET is more likely to pick up my cancer’s location at my PSA level.
Let’s start with the BLUF:
No definite evidence of locally recurrent or metastatic disease within the abdomen or pelvis.
(If you don’t know, BLUF = Bottom Line Up Front).
There was one 9 mm kidney-shaped lymph node that caught their attention, but didn’t think it to be remarkable.
They also commented on a bunch of my other organs and bits and pieces, but nothing seemed too out of the ordinary for any of them aside from a few dents and scratches from 63+ years of normal wear-and-tear and countless miles/kilometers.
The fact that the CT scan didn’t pick anything of substance up is a good thing and a bad thing. Good because it didn’t see anything; bad because it didn’t see anything. The likelihood of it detecting the lesions at my PSA level were small, and we knew that going into this. So even though we didn’t see anything, that doesn’t necessarily mean that it’s not there.
I did get a chuckle out of one line in the report:
Multidetector CT abdomen/pelvis was obtained after the uneventful administration of intravenous contrast.
Uneventful for who??? The radiologist? Sure. I did everything in my power to not puke all over their $300,000 scanner. 😲
I expect we’ll have the same result with bone scan next week, but time will tell.
That’s all for now.
Just a quick update…
This morning, I went onto the UCLA website and filled out the form to request more information about the Ga68 PSMA PET scan and perhaps even schedule an appointment with them. We’ll see how long it takes for them to respond. I’m gue$$ing it may be pretty quickly as they want to get more people using their test and facility. Ju$t a hun¢h.
“Cynic, table for one. Cynic.”
That contrast used in the CT scan yesterday really kicked my butt. The juice was injected into me shortly after 2 p.m., and as I was heading to bed around 9 p.m., I could still feel some of the side effects from it.
I did drink a lot of liquids to help purge it from my system and that translated into multiple runs to the toilet through the night last night. Oh well. It all caught up with me around 2 p.m. this afternoon when my ability to focus just ran head-on into a brick wall. I hung it up at the office and came home.
I just checked for the scan results online, and nothing posted yet. I suspect it will be on the weekend that I’ll be able to see them. Of course, they’re usually written in such a away that a lay person has trouble comprehending what’s on the page. We’ll give it a try, though, when the time comes.
That’s about it for today. Hopefully, the next post has news about the PSMA test or the CT scan results, or both.
Until then, be well!
You know me. I love tracking things, and this post is the 400th published post on this blog. Woo-hoo! 🎈🎉✨ Of course, I would have preferred to not have written any of them at all, but that’s life.
I thought I had had a CT scan in the past, but if I did, I don’t remember it being anything like what I experienced today. It kicked my ass. Technically, it was the contrast they injected into me that kicked my ass. The scan—sliding in and out of the scanner—was a non-event.
The radiologist forewarned me of the sensations that I would experience shortly after he injected the contrast. The sensation of a full and warm bladder? Check. Metallic taste in my mouth? Check. A warm sensation throughout my body? Check.
What he didn’t do a very good job of was forewarning me of the intensity of the some of these things. At one point, I thought I was going to vomit like Vesuvius. It was awful. As soon as he stopped the IV flow of contrast, I could feel some of these side effects dissipating. (But not nearly as quickly as they came on.)
I didn’t even bother to ask the technician if they saw anything odd on the scan as they were running the test. I’ll usually do that because sometimes, if you’re lucky, the technician will help you out. They may not be able to be all that specific, but I’ve had one or two tell me, “You really don’t have anything to worry about.” I was just more focused on getting out of there without puking.
The whole appointment went like clockwork and went faster than I expected. My appointment was for 2:30 p.m. I pulled into the parking garage at 1:45 p.m.; was checked in a Radiology by 2 p.m.; on the scanner bed by 2:10 p.m.; and headed back to my car by 2:35 p.m. Again, I know there are tons of complaints about the VA healthcare system, but San Diego VA Medical Center has been top-notch as far as I’m concerned.
The radiologist thought they would have the full results available by Friday.
I’ll have to admit that on my commute to work this morning, I had a bit of a knot in my stomach. Not because I was afraid of the scan (now I am—a little), but because this is the beginning of the process that will give me results I may not want to hear.
On a related note, my employer-provided healthcare insurance did confirm that the Department of Nuclear Medicine at UCLA is in network, so that’s a good thing.
What’s next? Here’s an estimated timeline:
- Get online access to CT Scan results sometime this weekend or early next week.
- Have the bone scan on Friday, 23 July.
- Get online access to bone scan results 3-5 business days after the scan.
- Have a follow-up appointment to review both scan results with the urologist on 3 August.
I’ll contact UCLA to start that process and hopefully have all of my homework done in time for the appointment on 3 August.
Well, time to drink a few liters of water to purge that contrast out of me.
Anticipation for this appointment really did a number on me for some reason. I was nervous to the point of feeling queasy as I was driving to the San Diego VA Medical Center, which is quite unusual given how many times I’ve done this. I guess that this was different because my PSA had broached that dreaded 0.2 ng/mL mark.
Okay. I started this post (above) while sitting in the waiting area waiting for my appointment, and afterwards, my plan was to sit down at home this evening and summarize what we discussed. But the doctor just called a few minutes ago with some information that completely changes how I’m going to approach this post.
In a nutshell, one of the things we discussed was re-running the PSA test to see if last month’s 0.21 ng/mL was a real reading, or if it was an anomaly like the February 2020 drop from 0.16 ng/mL to 0.08 ng/mL. She even asked me if I had had an orgasm or rode a bicycle or did other similar activities before the June test. I had done none of those.
I asked to have the test re-run for peace of mind and she put the order in the system. She said that she should be able to see the results later this afternoon before they’re posted online, and instructed me to call her later in the day. She just returned my call with the results: my PSA came in at 0.21 again, confirming the June result. (You can also see that my PSA doubling time dropped to 48.1 months from 52.8 months in June.)
I’m not pleased that I’m hanging out in the 0.21 range, but I am pleased to have the confirmation. Now we know what we’re dealing with.
During the consultation, we talked about possible courses of action. The first was to get the results and, if they were still hanging in the 0.16-0.18 range, we’d continue to monitor, perhaps bumping the frequency of PSA tests to three or four months instead. Obviously, that plan got tossed out the window.
If the PSA came back with a confirmatory value, we agreed that scans to try to locate the cancer would be an appropriate next step. That was a great opening for me to talk about the Ga-68 PSMA PET scans at UCLA, but more on that later.
One thing that I’ve noticed in my years of being cared for at the VA Medical Center is that they do seem to be a tad slower to embrace some of the new technologies, definitions, and treatment options that are out there. Their protocol for someone in my situation is a bone scan in combination with a CT scan, so that’s what I’ll be calling to arrange tomorrow.
I argued that it’s very unlikely that the bone scan will pick up anything at my PSA level, and my doctor’s response was that we might be surprised. Ditto for the CT scan. If both scans are negative, the protocols would allow us to proceed to an Axumin PET scan done at the VA Medical Center. If the Axumin PET scan came back negative, then we may be able to figure out a way to get the PSMA PET scan at UCLA.
Of course, my preference would be to go straight to UCLA and skip the bone, CT, and Axumin scans altogether, but if those are the protocols that may get me answers I’m seeking, then I guess I need to follow them. Even so, I may try to push for the PSMA PET in place of the Axumin (I even mentioned to her that I may be willing to pay for it myself if the VA and my own insurance didn’t cover it).
One of the questions that I asked was about when the actual PSA value trumps the PSA doubling time when it comes to deciding to take action. Clearly, each case is unique and there is no definitive answer, but my doctor’s take on it was that she wouldn’t let a PSA go above 1.0 ng/mL without taking some action.
She did, however, bring up the fact that it’s becoming more widely accepted to do exactly what I’ve been doing—continuous monitoring. Too many patients are being overtreated with salvage radiation therapy with no guarantee of it being curative. She referenced how the American Urological Association (AUA) and National Comprehensive Cancer Network (NCCN) guidelines have been evolving over the years in a way that supports monitoring over action in some cases.
When I brought up the Ga-68 PSMA PET scan, it seemed that I may have been a little more up to speed on the topic than she was. We talked about it being FDA approved at UCLA and she reminded me that, just because it’s approved doesn’t mean it’s covered under the VA or private insurance yet. I agreed, and that’s when I mentioned I may be willing to pay for it myself.
I brought a hard-copy of this paper on the Ga-68 PSMA PET scan and left it with her for her review. We also reviewed the chart showing what the scan was picking up at various PSA levels, and where it was picking it up.
I found it interesting that one of the first things she looked at with the paper was who the authors were. I guess quacks write papers, too.
It’s been one helluva weird day, that’s for certain. It started with me feeling uncertain and queasy and, in a bizarre twist, I feel as though I’m ending it on a high note.
Sure. No one wants to have recurrent cancer. It sucks. But now I feel the uncertainty brought on by PSA results bouncing around for the last six years is finally coming to a close, and I can really begin to focus on what happens next. There’s a sense of direction, albeit down a path none of us would like to go down. (Yes, there’s lots more uncertainty ahead, I’m sure, but I’ll cross that bridge when I get to it.)
Tomorrow I’ll call to get the bone and CT scans set up and, once we know the dates, I can arrange a follow-up appointment to review the results.
If they come back negative, then we try the Axumin or PSMA PET scan if possible. Of course, I’ll be doing some reading on Axumin scans in the interim (I really haven’t focused that much on them as an option, so I need to learn more about them).
Having cancer sucks. Having more definitive information doesn’t.
Stay well, everyone!
Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
I came across this video highlighting Ga68 PSMA PET imaging from the doctor at the University of California San Francisco who helped with developing this imaging technique. It’s a bit long and a bit technical in some places, but gives a good overview.
I went for my originally scheduled six-month PSA test last Thursday and was able to look online last night to see the disconcerting results: A substantial increase to 0.21 ng/ml.
Breaking the 0.2 ng/ml threshold now officially puts me into the biochemical recurrence category, at least according to the long-held definition of biochemical recurrence.
Needless to say, I felt gut-punched on seeing the results. Sure, I’ve know for over five years that my trend has been upward, but I guess I got comfortable with it bouncing around the 0.10 to 0.16 range for the last few years. I wasn’t expecting such a substantial leap between my “surprise” PSA test in February and this one in June.
When it comes to PSA doubling time, it dropped from 67.7 months to 52.8 months with this latest test result included in the calculations. If I look at only the five most recent test results, the PSA doubling time drops to 46.5 months. Of course, all of those are great numbers that a lot of guys would like to have.
My appointment with the doctor isn’t until 6 July, and it will be an interesting conversation now that we’ve crossed that magical line of 0.2 ng/ml. In a way, I’m glad I’ve got several weeks to think this through and to come up with good questions to ask so that I’m prepared for the appointment.
Of course, salvage radiation therapy just moved to the top of the list of things to talk about. It will be interesting to see if their recommendation changes given the 0.21 number versus the long PSA doubling time.
Needless to say, there’s going to be much reflection and research in the weeks ahead.