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
If PSMA PET shows limited site(s) of recurrence, SBRT radiation may be an option to “ablate the larger cancer deposit and work in concert with ADT.”
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.
VA Urologist Discussion
Preparing for the meeting today, I put together an outline of things I wanted to discuss:
PSMA PET Scan
If the VA would cover the cost this time.
If there’s a difference in the tracers used (Ga-68 versus PYLARIFY® (piflufolastat F 18)
ADT and the timing
Whether they prefer a sequential or combination approach (e.g., include chemotherapy with ADT).
Getting a medical oncologist who specializes in prostate cancer involved in the case.
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:
A date to have the bone scan.
A follow-up date with the urologist (dependent on scan results).
A date for the next PSA test.
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.
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.
The Prostate Cancer Foundation is having a Zoom webinar on 14 March 2023 04:30 PM Pacific Daylight Time (Los Angeles) to review PSMA PET imaging from both the doctor and patient perspectives. You can register by clicking the image below or by clicking HERE.
(Daylight Saving Time in the U.S. begins on Sunday, 12 March 2023.)
Again, going into this, I knew that there was a 50-50 shot that the PSMA PET scan would be able to pick up anything at my PSA level, and it appears that I fell into the “we didn’t see anything” category:
ONCOLOGIC FINDINGS:
History of prostate cancer status post prostatectomy with biochemical recurrence with: – No focal PSMA-uptake in the prostatectomy bed. – No PSMA-PET/CT evidence for distant metastasis.
The fact that they didn’t see anything in my prostate bed and elsewhere is both a good and bad thing. Good, in that whatever cancer may be there was so small that the scan couldn’t pick it up. Bad, in that the scan wasn’t sensitive enough to pick things up at my PSA level (0.22 ng/ml).
As a reminder, I’m just looking at the printout of my results online, and am not yet in a conversation with my doctor about the results, so I’m a little reluctant to come to too many conclusions about some other comments in the report without the benefit of his expertise. There was a section labeled:
INDETERMINATE FINDING:
– Focus of intense PSMA-uptake at the left lung lower lobe (fused 4-263) without CT correlate, likely a PSMA injection thrombus, not favored to represent metastatic disease. Attention on follow up.
I added the emphasis above, but it’s something that raises an eyebrow and probably warrants further monitoring or investigation as suggested. That’s something I’ll speak with the doctor about.
Speaking of speaking with the doctor, when I had my appointment in early November, we agreed to schedule a follow-up appointment to go over the scan results in January. However, the first available appointment wasn’t until the first week of February. I’m going to work on moving that earlier, even if it’s a call-in appointment instead of an in-person appointment.
Am I happy with the results? Sort of.
We know from my rising PSA that there’s cancer somewhere in some quantity. While this may be a “false negative,” it’s nice to know that I didn’t light up like the Rockefeller Center Christmas tree. That would have been bad.
Will this cause me to run to the radiation oncologist to start salvage radiation right away based on my PSA alone? Nope. I have another PSA test in January, and if that stays in the 0.21-0.22 range, I’ll be content to continue my monitoring. But if it shoots up drastically, that may cause me to reconsider.
Was it worth $3,300 out-of-pocket? I don’t know. I’m going to get back to you on that one. 🙂
So that’s my PSMA PET scan story, and I’m sticking to it.
If I don’t post again before Christmas, I hope you have a great holiday season!
Here’s the second part of Dr. Kwon’s video. Like the first video, it’s very informative (perhaps even more so, at least for me).
Even though I had seen similar statistics before, one of the kickers for me is that only 33% of recurrent cancer is found in the prostate bed (local); 45% will be metastatic; and 22% will be both local and metastatic. As Dr. Kwon rightly points out, knowing where the cancer is located will guide your treatment decisions, and that’s why I have been so reluctant to blindly step into salvage radiation therapy without having first identified the location of the cancer. Why risk the possible toxic side effects of radiation if you’re not radiating in the correct location?
In my previous post, I mentioned that Dr. Kwon was a pioneer in dealing with oligometastatic prostate cancer. At the beginning, many in the profession dismissed his work out of hand (I’ll admit I was skeptical, too), but it seems that over the last 10 years, his work has gained the respect of others and is supported by further research.
In any case, this video is 31 minutes long and I encourage you to watch it.
Here’s a very informative 23-minute video for both the newly diagnosed and those of us who have been playing with this for a while. It gives a good overview of prostate cancer, imaging in general, and PET imaging specifically.
Dr. Kwon is from the Mayo Clinic and, as I recall, was an early advocate of using PET imaging in identifying and treating oligometastatic prostate cancer.
This video was from the Prostate Cancer Research Institute (PCRI) YouTube channel. I’m not sure when Part 2 will be released.
As is often the case with medical tests, there’s a bunch of waiting involved. Even though the PSMA PET scan technician told me that the doctors would review the scan and have the results in 1-2 business days, apparently that didn’t mean that I’d have access to them right away.
After a week or so of hopping online, I emailed UCLA Nuclear Medicine to ask when I would be able to view the results on my online account. Their response:
Your results are set to auto-release in your account on 12/16/21 after 3:41pm.
Now that’s a rather specific date and time which seems quite unusual to me, but at least I have an answer. (It reminds me of my Navy days; see my sea story below.)
That would be my one complaint with UCLA. While the staff administering the scan was very patient-centric, the administrative end—not so much. I guess when you go to a world-renowned medical treatment facility, you’re just one of thousands and thousands of patients and personal attention becomes more challenging.
On a related note, I also alerted the VA San Diego to be on the lookout for the results and to contact me when they come in. So far, no luck.
More to come.
When I was a Surface Warfare Officer in the U.S. Navy, I qualified as Officer of the Deck, which meant that I stood watches on the bridge of the ship and was responsible for everything that went on during my 4-6 hour shift.
The captain of the ship (of all Navy ships) had something called Standing Night Orders for the Officers of the Deck to follow at night while the captain was asleep in his cabin. In the standing night orders, there was a place for the captain to write down whether or not he wanted a wake-up call and, if so, at what time.
On one of my first overnight watches with this captain, he put down that he wanted a wake-up call at 5:28 a.m.
That morning, I was busy with my head in the radar scope hood, trying to track and avoid colliding with another ship, and I missed the 5:28 a.m. call to the captain. But not to worry.
At 5:29 a.m., he was standing on the bridge in full uniform, brusquely asking, “Why didn’t you call me at 5:28 a.m.???”
Prick.
Fortunately, we had a change of command and received a new, human captain about 6 weeks later.
It’s over. The photos for my holiday cards are taken and ready to be processed. Look for a Christmas card with a cross section of my pelvis coming to you soon!
I had my 68Ga PSMA-11 PET and CT scans yesterday. In short, all went well but the technician couldn’t (or wouldn’t) tell me if the scan lit up like the Rockefeller Center Christmas tree. She said that images had to be processed first, and that she wasn’t trained to interpret them anyway. The doctors would have to do that in 1-2 business days.
The whole process took just under four hours—from the time I left my car in the parking garage to the time I got back in it.
The Process
Arrival
I checked into the Department of Nuclear Medicine about 40 minutes before my scheduled appointment (I was told 7 a.m. by the booking representative), and was told that my appointment was actually at 7:45 a.m. Oh well. It gave us a little time to complete the necessary paperwork and payment.
You’ll have several forms to complete, mostly asking about your current health status and history. Pretty easy. Just check the boxes and sign. You’ll also get one of those plastic wristbands with all of your information on it placed on your wrist. Mine initial band had my wrong birthday on it, so we had to have that corrected and a new wristband printed.
If you’re like me and your paying for it out of pocket, this is also where they’ll ask for your credit card (no cash or check) and charge the $3,300 fee.
Preparations
After you’re checked in, they’ll let the staff know that you’re there ready to begin the preparation process.
In the preparation room, the technician will insert an IV catheter into your arm that will be used to inject the 68Ga tracer and iodine contrast. As he does this, he’ll go through a very thorough explanation of what to expect once the scans begin.
He will also prepare another contrast that you take orally. It’s about 1 to 1.25 liters of a slightly yucky-tasting solution that you have to consume over the course of 45 minutes. They’ll also want you to reserve about 6 to 8 ounces of the fluid to gulp down just before you go in the scan. They want to have it in your stomach and not your intestinal tract. But you can’t start ingesting any of this until the 68Ga tracer is injected into your arm.
I believe that they actually manufacture the tracer on the spot for each patient. This is because, with its relatively short half-life, they can’t have it sitting around on a shelf waiting to be used.
When he returned with the 68Ga tracer, it was in this cute little container that I’m guessing was lead-lined to contain the radiation. He connected it to the IV catheter, juiced me up, and instructed me to start drinking the solution.
The last thing that he did was give me a little, “This guy is radioactive,” card to show to the authorities should I happen to set off sensors at airport or border security check points. Thankfully, I drove, so it wasn’t a concern for me.
That whole process took a little over an hour.
The Scans
Once you’re primed and ready to go, they’ll take you to the scanning room but they’ll ask you to stop by the toilet to empty your bladder first.
Interestingly the only articles of clothing that I had to remove were my shoes and jeans. Actually, they gave me the option of just pulling my jeans down below my knees or wearing a pair of hospital-provided pajama bottoms. I opted for comfort and the pajama bottoms.
They’ll place you on your back on the scanner bed and place a little cushion under your knees to make you feel a little more comfortable and, I suppose, to help better position you for the scan. You’ll raise both arms over your head and you’ll have to keep them there throughout the scan.
They’ll use your IV catheter to inject some iodine as a contrast. For me, the last time I had a CT scan and they injected the iodine, I became rather nauseated and told this technician about that incident.
She told me that they inject the contrast at a much slower rate than what’s used for a normal CT, and that should lessen the effects of the nausea. Even so, for insurance purposes, we put a little bib around my neck and a towel on my left shoulder just in case. “Try not to move your body if you do vomit.” Yeah, right. Good luck with that. Fortunately, she was right about the slower injection rate. The feeling was there briefly, but much less intense that before.
They’ll start with the PET scan first while the 68Ga tracer is still pretty strong, and it probably took about 25-35 minutes (I couldn’t see a clock for reference). Your only task is to stay completely still throughout. At the very beginning, you’ll be asked twice to inhale and hold your breath for about 10 seconds. After that, you just lay there, close your eyes, and enjoy the ride. (The scanning machine is nearly silent.)
Once the PET scan is done, they’ll send you off to the toilet once again to empty your bladder before the CT scan.
You’ll get back in position onto the scanner bed just as before—knees propped up and arms above the head—and they’ll begin the CT scan. The technician said it would take 8 minutes, but it seemed closer to 15 minutes to me.
When you’re done with the CT scan, you’re done. You get dressed and head home—I didn’t have to stop at the reception desk afterwards. They will tell you, however, to drink lots of fluids (preferably water) to flush the contrasts from your system.
They will forward the results to the physician who ordered the scan.
Effects
Aside from a slight metallic taste in my mouth and being really hungry after fasting in advance of the scans, I felt fine leaving the hospital. My shoulders were a little sore from holding my arms above my head for an hour or so, and that was about it.
When I arrived home, though, it all caught up with me. I was spent.
During the whole process, I felt very calm and relaxed, so I didn’t think it was stress-related fatigue, but I guess our subconscious can play games with us. It may have had something to do with waking up at 4 a.m. and not being able to fall back asleep, too. Or a combination of all of the above. Regardless, I just crashed on the sofa and took a nap.
One other thing that happened yesterday afternoon was that I had a bunch of gremlins doing a jig in my stomach that caused me to run to the toilet half a dozen or so times. (TMI, I know.) Whether it was related to the contrasts or the hot giardiniera peppers I had on my Italian beef sandwich at lunch, I don’t know. Needless to say, it wasn’t anticipated either way. I’m better this morning, with a few lingering grumbles going on down there.
Logistics
Scheduling
Regular readers already know the hassle I went through trying to get San Diego VA Medical Center to talk with UCLA Department of Nuclear Medicine, so I won’t rehash that here. Needless to say, be persistent if you encounter similar issues.
I did find it interesting that the scheduler told me my appointment was at 7 a.m. when it was actually at 7:45 a.m. I’m not sure how or where that disconnect came into play.
Lodging
Because my appointment was so early in the morning, I opted to drive from San Diego to Los Angeles the afternoon before and stay in a nearby hotel to the tune of $216. Apparently, UCLA has its own hotel at the convention center, but the price would be about the same, if not more.
Location
Obviously, UCLA is a huge campus and I wished that the scheduling office provided more information about where the building was, where to park, and where the Nuclear Medicine department was located when they set the appointment. They provided nothing until I asked.
They are located at 200 Medical Plaza Driveway Suite B114, Los Angeles, CA 90095.
When you pull in from Westwood Blvd. to Medical Plaza Driveway, you’ll turn right but will want to be in the left lane to enter the parking garage (red arrows below).
Entrance to parking garage from Westwood Blvd (red line) and walk inside the building from the lobby to the North Elevators (blue line).Photo from Google Maps.Entrance to parking garage (red arrow) and walk along the front of the building (inside) from the lobby to the North Elevators.Photo from Google Maps.
Once you’re in the parking garage, you can take the elevators on the west side of the building up to the lobby. You’ll walk all the way across the lobby and follow the signs for the North Elevators (blue line above). Take the North Elevators down to Level B1 and the Nuclear Medicine department is right off the elevators in Suite B114.
Parking is $14 per day and, no, they won’t validate your parking ticket even after spending $3,300.
Final Thoughts
First, the staff in the Nuclear Medicine department were amazingly friendly and caring. It made the whole experience all that much better.
Second, I’ll have to admit that I second-guessed myself in wanting to have to get this done after the insurance company denied the payment. Not because of the cost (although it’s not insignificant), but because I knew from my own research that the 68Ga PSMA-11 PET scans are better at picking up the location of the cancer when the PSA level is 1.0 ng/ml (the insurance company threshold), than at my 0.22 ng/ml PSA level. Am I wasting $3,300 on a crap shoot? We’ll soon find out.
Finally, there’s the, “If you can’t stand the answer, don’t ask the question,” factor in play here. If the scan wasn’t a crap shoot and does, in fact, reveal the location of the cancer, the pressure to act (i.e., salvage radiation) goes up by an order of magnitude. As you already know, I’ve been trying to dodge the short and long-term toxicities of salvage radiation for quite some time now, and my preference would be to continue to do that for as long as I can. There will be more research and decisions in the days and weeks ahead, that’s for certain.
Let’s just hope that getting the results from UCLA to VA San Diego won’t be as difficult as getting them to talk to each other in the first place.
Dan's Journey through Prostate Cancer 