Just as predicted, the scheduler took a couple of days to call. We’ve got the PSMA PET scan on the calendar for 12 March 2025, well ahead of the follow-up appointment with the urologist on 1 April 2025. No bone scan needed.
That’s it. That’s the news for today.
Be well!
You may have overachieved when your doctor asks, “Are you a urologist?”
I had a good meeting with the real urologist this morning, and it appears that he actually read the questions I sent to him in advance. That made the discussion easier.
First on my question list was whether a PSMA PET scan was warranted. He agreed that it was, and we’re going to try to get that scheduled soon. He thought that, with my PSA at 0.94 ng/mL, there would be a better chance of actually finding something this time. The only concern is that the VA has required a bone scan ahead of the PSMA PET scan in the past, and he’s going to see if we can skip that. It may take several days for the schedulers to call me.
We did discuss the possibility of further radiation if a lesion is found away from the pelvis. I mentioned that I had had blood in my stools and mild radiation proctitis discovered (and addressed) during my recent colonoscopy. He was not keen on further radiation to the pelvis under those circumstances. Neither am I.
My next question was about the timing of beginning androgen deprivation therapy (ADT). He was pretty squishy on the timing, not knowing exactly where we’re at. I mentioned that, a year ago, the urologist told me that we’d start when my PSA hit 2.0 ng/mL, but the medical oncologist suggested holding off until metastasis. He generally agreed with the concept of starting it later so that the cancer doesn’t become resistant to it prematurely, with one caveat.
He seemed to give more weight to my PSA doubling time than did other doctors, and that’s when he asked me if I was a urologist. I had presented him my graph showing my PSA progression, and it showed my PSA doubling time. “How did you know how to calculate it?” I told him that I used the Memorial Sloan-Kettering PSA doubling time calculator. To him, my PSADT of 9 months was creeping into “concerning” territory, and might make him a little more inclined to start ADT earlier.
I asked him, “At what point do we call this metastatic disease?” and, “When should we get a medical oncologist (MO) involved?” To the first, he said that all we know is prostate cancer is somewhere in my body, but wouldn’t go so far as to call it metastatic yet. To the second, he was open to brining in a MO if the results of the PSMA PET scan warranted it.
We agreed to the following plan:
I have the six-week follow-up appointment scheduled for 1 April 2025. My concern is getting the PSMA PET scan scheduled and completed before then. If I need a bone scan in advance of it, that may complicate or delay the PSMA PET scheduling further. If push comes to shove, I already had an appointment scheduled with urology on 8 May 2025, so that’s not that much of a delay if we can’t get everything scheduled before 1 April. 2025.
It was a productive meeting from my perspective, without any surprises.
More to come as we get things scheduled.
Header image: Cuyamaca Rancho State Park, California
This headline on the AP News feed caught my attention this morning:
China bans exports to US of gallium, germanium, antimony in response to chip sanctions
When you read the article, it omits any reference to gallium being used in medical diagnostics, so I have to wonder if this ban will adversely impact the ability to do 68Ga PSMA PET scans.
That question led me to a quick Google search on the production of 68Ga that yielded:
I’m no nuclear physicist or radiopharmaceutical guy but, given that process outlined above, it sounds to this layperson that PSMA PET scans could possibly be impacted.
Or I could be completely out to lunch, reading far too much into the story.
It’s definitely something to keep and eye on going forward, as I’m guessing another PSMA PET scan is in my future in January or February.
Here’s another informative video from the Prostate Cancer Research Institute for the ten percent of patients for whom PSMA PET scans may not work.
If I go for a third PSMA PET scan later this summer, and it fails to show anything at an even higher PSA level than my first two inconclusive scans (0.22 ng/mL and 0.37 ng/mL), I may find myself in that category.
I’ll provide my normal monthly update next week after my visit to the urologist on 14 May.
No evidence of recurrent prostate cancer or metastatic disease.
I know I should be excited but, at the same time, I don’t think I’ve been so frustrated by “good” news. Thanks to the steady increase in my PSA, we know something is happening somewhere, and I was really hoping this scan would end the game of cat-and-mouse that we’ve been playing trying to determine where the cancer is and what to do next. It didn’t.
Even though I recognized going into the scan that, at my PSA level (0.37 ng/mL), there was an approximate 40% chance of detecting something, I was hopeful it would come up with something this time. Silly me and my expectations.
The other thing I’m beginning to wonder is if I’m in that 10% of patients for whom PSMA PET scans don’t work. (You may recall that being mentioned in this video from the PCRI: Rising PSA After Prostatectomy.) I have to dig into that more to see if it’s just PSMA PET scans that use Gallium-68 as the tracer, or if that applies to any PSMA PET scan regardless of the tracer used. I’m guessing it’s the latter.
Choline and Axumin scans are another option, but they don’t start reliably picking up cancer locations until the PSA is at 1.0 ng/mL or higher. Assuming my current PSA doubling time (6.2 months) remains steady, that means waiting another 11 months before I hit 1.0 ng/mL for those scans to have a chance of seeing anything.
I’ll be putting together my list of questions for the urologist appointment on 13 February (I’m open to suggestions). I suspect we’ll have a good discussion on subsequent PSA testing, the value of knowing where the cancer is located at this point, and when to start hormone therapy.
Again, the silver lining in this is that my scan didn’t light up like the Las Vegas strip. I need to keep that in mind.
Happy Friday!
PSMA PET scan No. 2 is behind me.
This was different from and easier than the first one. That’s because the VA just did a PET scan today, whereas my scan at UCLA included a CT scan on top of the PET scan.
That fact really didn’t occur to me until all was said and done. I’ll have to ask the doctor about the đifferent approaches.
In any case, today they juiced me up with Gallium-68 shortly after arrival. About 45 minutes later, I was on the scanner table ready to go. I barely felt the table move me through the scanner, and it took about 45 minutes to complete the scan.
Of course, the technician wouldn’t give me any sneak peak insights. “The doctor will interpret the scan.” I expect it could take a week or so for me to see any notes in my online records.
Again, even with my PSA closing in on 0.40 ng/mL, there’s only about a 50-50 chance it will give us any useful information at that PSA level. (As a refresher, my PSA going into the UCLA scan was 0.22 ng/mL.)
More to come.
Just a quick update.
You already know that I completed my bone scan, which the VA required (for some inexplicable reason) before ordering a PSMA PET scan. This morning, I was able to schedule the PSMA PET scan with the VA, and it’s set for 31 January 2024. That was much faster than scheduling it with UCLA two years ago.
I’ll go for a PSA test the week before the PSMA PET scan, perhaps on 24 or 25 January. It will be interesting to see how much it’s increased. As a refresher:
9 May 2023 – 0.11 ng/mL
31 October 2023 – 0.21 ng/mL
6 December 2023 – 0.33 ng/ML
Should I get a pool going to see what it will be this time?
I have an appointment with the urologist on 13 February to review the results and map out next steps.
More to come.
Header image: Sunset over the Pacific Ocean at Carlsbad Beach, California
I’ve had conversations with my radiation oncologist and my urologist this week.
The conversation with the RO was via email, which was fine by me. I’m thankful he takes the time to get back to me. In a nutshell, he said:
His recommendation was to get the PSMA PET scan now or to wait one month until early January 2024 and take another PSA test. If it remains steady, “we are good,” but if PSA rises again, it would be time for a PSMA PET scan.
I’ll let him know it took me two months to get my first PSMA PET scan at UCLA after speaking to the scheduling office, so getting it “now” may not be an option.
One other thing I need to nail down is where I can get the scan done again. When I had it in November 2021, the only two facilities in the U.S. that were approved to do the scan were UCLA and UCSF. Since then, far more facilities are capable of doing it, I believe including UCSD.
Preparing for the meeting today, I put together an outline of things I wanted to discuss:
But once I got there, I was definitely off my A-game for some reason, and the conversation was one of the weirder, more disjointed conversations that I’ve had with a VA urologist.
First, he was a new (to me) urologist and he entered the exam room a bit like a bull in a China shop. He didn’t introduce himself and just started out with, “I looked at your PSA and read your email. What questions do you have for me?” Not even so much as a, “Sorry to see your PSA increase after SRT.” That threw me off right there.
It was a bumpy conversation, but we eventually talked about most everything on my list. I’ll save the bit about the scan for last.
Interestingly, he seemed to downplay spot radiation if lesions are found during a scan and was more focused on starting androgen deprivation therapy as the next course of treatment. But he wouldn’t start it until after a scan was completed. He did say under certain specific circumstances, spot radiation may be helpful.
In the discussion about sequential versus combination treatments, he said that they would do a combination. I asked if it would be ADT and chemotherapy, and he said no. It would be ADT and antiandrogen therapy in combination using Eligard for the ADT and one of the following:
I asked about chemotherapy with ADT, and he said that the antiandrogens have taken the place of Docetaxel (Taxotere), which I thought was an odd statement from my limited knowledge. I believe that Taxotere is still very much a treatment option used later in the progression of the cancer. I need to dig into that more.
Concerning shifting my case to a medical oncologist (MO), he said that would happen on its own, as he wasn’t allowed to prescribe the antiandrogen drugs. The MO would also know how to better manage the side effects of the combined therapies.
Now, for the kicker part of the conversation…
He agreed that a PSMA PET scan was the best way forward but—and even he disagreed with this—the VA protocol is to have a bone scan first. The protocol said that, if a bone scan was negative, then a PSMA PET scan could be authorized.
He assured me that, at my PSA level of 0.33 ng/mL, the bone scan would, in fact, be negative. (Doing a quick Dr. Google search, it appears that bone scans start to pick up lesions when the PSA is over 20 ng/mL. Yep, 0.33 vs. 20.
So getting my soapbox and editorializing a bit here… It makes zero sense to get a bone scan in my present circumstances. None. The VA can be very slow to catch up with the times in certain circumstances, and this happens to be one of those times. It just seems to be a waste of time and resources when we already know that the bone scan isn’t sensitive enough to pick up anything at my PSA level. But I’m not sure I’m up for “fighting city hall” to try and get the PSMA PET scan out of the gate.
On a positive note, the VA apparently can now do the PSMA PET scan according to the doctor.
I have to admit that I’m toying with the idea of using my Medicare coverage and going outside the VA for the PSMA PET scan and skipping the VA bone scan altogether. I need to dig into that and see how that would work and how quickly that could happen.
I just want to make sure that I’m not shooting myself in the foot in the process—the VA has to authorize community care in advance for them to continue to cover the costs. I don’t want them to say, “Hey, you chose to go outside the VA system, so now you can pay for all the tests and drugs.” I know Medicare would pick up a good chunk of the costs, but I may be on the hook for more than I bargained for.
The urologist thought the bone scan could be scheduled pretty quickly and, if that’s the case, that may put me closer to a PSMA PET scan faster than if I try to go outside the VA and create new relationships with new providers (although I think my radiation oncologist at UCSD may be able to assist me in ordering one and getting it scheduled).
We ended the conversation with him saying that we’ll do another PSA test in three months. That surprised me a bit given its rapid rise over five weeks. “We know it’s going to increase,” he said, but he did offer to retest in six to eight weeks. I don’t think we ever landed on a firm answer, so I need to chase that down.
In a way, though, it’s probably more important to get the scan(s) done first, and tracking the PSA is secondary to that. Does it really matter if we retest PSA in eight weeks versus twelve weeks? I doubt it.
I left the meeting without:
Sounds like a productive meeting to me. 😂
One other thing that happened today, which was quite unusual for me, was that I was far more nervous going into it than I should have been. I don’t know what was up with that. I had difficulty articulating my thoughts, and my hand was shaking ever so slightly as I was taking notes. That freaked me out even more. I guess the emotions associated with this new chapter have been a bit more than I expected.
When the meeting was over, I sat in the waiting area for a good ten minutes to just decompress and to scribble down a few more notes while the conversation was fresh in my mind.
Once I calmed down, I went to the Nuclear Medicine department to try to schedule the bone scan, but the scheduler was away and the guy staffing the desk wasn’t familiar with the process. I’ll be back there tomorrow morning for another test2, so I can try scheduling again when I’m there tomorrow.
I’ll keep you posted.
Here is another informative video from the Prostate Cancer Research Institute and Dr. Scholz. It hit too close to home for me, as it describes the dilemma I faced in deciding when to initiate salvage radiation therapy.
Perhaps the key point that Dr. Scholz makes (at 6:08 in the video) is that there’s “a huge advantage of knowing where the cancer is and allowing the radiation therapist to target that spot” as it relates to a newer approach of letting the PSA rise so that modern imaging can determine the location(s).
Later in the video at the 9:40 mark, he goes on to say:
It’s quite tempting in many of the cases that I see to allow the PSA to go a little bit higher knowing that that 0.5 threshold [used by radiation therapists] was set at a time when we didn’t have scans and we didn’t know where the cancer was. There’s such an advantage of knowing where the cancer is and allowing the radiation therapist to target the disease that I tend to liberalize a little bit and allow the PSAs to rise above 0.5 if necessary.
In other words, because of the value in knowing the location of the cancer that can lead to curative outcomes if properly targeted by the radiation therapist, it may be worth allowing the PSA to rise to the point where it can be detected on a scan.
I toyed with the idea of getting a second PSMA PET scan when my PSA hit 0.33 and 0.36, but because it was rising rapidly and because I knew it could take two to four months to get another PSMA PET scan scheduled, I opted to act and go ahead with the salvage radiation therapy. I do have to question if it may have been wise to do the second scan so the RO knew exactly where to aim because, with my PSA rising again, we may have missed our mark.
Will I dwell on that? Nope. I made the best decision I could with the information available at the time.
The bottom line is that we all have to assess our own risk levels and be comfortable with our decisions.
Here’s a great video highlighting the decision-making dilemma that comes with a rising PSA after surgery.
It reinforces that I wasn’t nuts in agonizing over my decision to move forward with the decision for salvage radiation. There are just so many variables that go into the decision, and even the “experts” are really just taking their best guess at it.
Dan's Journey through Prostate Cancer 