Month 131 – Biding Time

There’s really not much to report this month other that I’m simply biding time until the PSMA PET scan at UCLA on 30 November 2021.

I did receive confirmation that the doctor put in the order for the basic metabolic panel test and another PSA test, so I may get those knocked out this week to make sure they go well. I have to bring a hardcopy print out of the BMP test results to the scan, so better to get it done early to make sure that I can have a copy made available. If I can’t print it out on my own, then I’ll ask for it to be available during my appointment with the doctor on 9 November. (That was my next regularly scheduled appointment. I had hoped we would be discussing the PSMA PET scan results by then, but that’s not meant to be.)

Work will be keeping me extraordinarily busy through mid-December so, in a way, that’s a plus. It should keep my mind off of all of this. I just need to make sure that work takes a back seat to any appointments or tests.


On an unrelated note, I was able to get my seasonal flu shot and my Pfizer COVID-19 booster shot last week. I did take them together and felt a little wonky for about 36 hours (fatigued, felt as though I had a temperature but didn’t). Who knows whether it was the flu shot or the booster that caused that (or both), but it really doesn’t matter. I’m better and I’m better protected.

So that’s about it for this post. More to come…

Be well!

Day 3,963 – Let the Referral Battle Begin

One of the first things that I did after returning from my trip to Yellowstone and the Grand Tetons was to call UCLA Department of Nuclear Medicine to check to see if they had all of the necessary paperwork from the San Diego VA Medical Center to schedule the PSMA PET scan.

They did not.

Apparently, they were still missing my demographic information, my insurance information, and at least a 6 month medical history for me. Grrrr. 🤬

I emailed the VA and got some mealy-mouthed response back saying that I should be the one providing the demographics and insurance information and, that if I wanted my medical records released, I had to complete and submit a form giving them permission to do so. They could have told me that weeks ago.

The medical records thing is particularly annoying because, according to the VA website, the Veterans Health Information Exchange is set up to electronically share medical records with certain community providers that are providing care. UCLA Health is one of the approved community providers.

The only quirk that I can see in this is that the community provider has to be providing me care and, technically, UCLA is not yet doing that, so I suspect the VA will claim that, because I’m not under active care there, they can’t share the records. A classic Catch-22. The kicker is that I don’t have to do anything to opt in to the sharing. It should automatically happen.

My plan going forward is to ask the VA about the VHIE and see what they say. But as a back-up plan, I’m going to print my VA health record for the last year, my insurance information, and provide them my demographic information, and send the entire packet to UCLA myself, VA be damned.

More to come, I’m sure. In the meantime, I’ll do my best to not let my vacation wear off too quickly.

Be well!

Day 3,941 – VA and UCLA

Progress. Slow, steady progress.

I received an email today confirming that the urologist had received, completed, and returned the referral form back to UCLA. They asked me to follow up with UCLA Department of Nuclear Medicine to confirm they received it. Gladly.

I called their scheduling office this afternoon to do just that but, unfortunately, my referral wasn’t in the system yet. I checked the time on the email I received, and it was only about two hours before I called UCLA, so that kind of makes sense. She said that it can take 24 to 48 hours to get the referral into the system.

The scheduler said that they’d review the referral, place the order for the 68Ga-PSMA-11 PET scan, and then call to schedule it. Right now, they’re scheduling in late October unless there’s a cancellation that I might be able to take advantage of.

On the one hand, I’m perfectly fine taking the ignorance-is-bliss mode of not rushing to this (considering my long PSA doubling time); but on the other, I want to get this going and find out what the next step will be. Right now, the primary thing on my mind is planning my next vacation.

I’ll call again on Friday to see if my referral landed in the system, and we’ll go from there.

That’s the latest in this odyssey.

Be well!

Day 3,939 – UCLA Referral Update 2

Just a quick update to yesterday’s post…

I called the UCLA scheduling office and explained the situation to the scheduler, and she thought that it was odd that the referral form wasn’t sent to my urologist for the referral. In any case, it took a whopping 5 minutes and 54 seconds—including navigating the phone menu tree, waiting for “the next available operator,” and the discussion—to hopefully break the logjam.

I called the doctor’s office and emailed him to let him know that he should be on the lookout for the faxed referral form. We’ll see what happens next—and when.

Be well!

Day 3,938 – UCLA Referral Update

I grew a little impatient with my team at the San Diego VA Medical Center not providing any information about the referral for the PSMA PET scan at UCLA since our consult on 3 August, so I sent them an email at the end of the week asking for an update.

This morning, the doctor that I had for the consult—the one who thought this was a good idea and who seemed eager to get it scheduled—reported that UCLA has yet to send him the form that he needs to do the referral. He didn’t exactly say when it was that he asked, but he did say that he would follow up with them tomorrow.

He gave me their fax number, so I, too, will give UCLA’s Department of Nuclear Medicine a call tomorrow to see what needs to be done to get them off the dime and to send the referral form.

That’s about it for now. More to come, I’m sure.


On an unrelated note, my bonkers incontinence issues have calmed considerably, but not quite back to where I can go without pads yet. Not sure what that was all about.

Be well!

Watch: Current Status of PSMA Diagnostics

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.

Day 3,819 – Doctor’s Visit

The dreaded tools of the DRE trade.

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.

Instructions for PSMA Referral

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.

Be well!

Watch “PSMA After Recurrence, and PSMA Specificity | Answering YouTube Comments With Mark Scholz, MD | PCRI” on YouTube

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.

Day 3,910 – Bone Scan Results

As a baby boomer, I grew up with Spock. Both of them.

First, there was Dr. Benjamin Spock, the noted pediatrician who told my parents—and millions of other parents—how to raise and care for their kids. Then, of course, there was the Star Trek Spock, whose existence was rooted in Vulcan logic.

Now I’m not a Trekkie, but if you’ve read any part of this blog, you do know that facts, figures, and logic are high on my priority list, too. I thought, “What better way is there to outline the possible scenarios and decisions that are ahead of me than to put them all in a flow chart.” So here goes:

So let’s step through this.

We start with the CT and Bone scans that happened over the last two weeks. The first question is, “Did those scans determine the location of the prostate cancer (PCa)?”

If the answer is yes, then the next question is, “Was the prostate cancer in the prostate bed and/or pelvis?”

PCa in Prostate Bed/Pelvis

If the answer is yes, the PCa is in the prostate bed and/or pelvis, then Salvage Radiation Therapy (SRT) with or without Androgen Deprivation Therapy (ADT) (Hormone therapy) offers the last possible chance of a true cure. Of course, there are risks associated with SRT that would impact your daily quality of life: bowel control, bladder control, and lack of sexual function. Additionally, depending on which study you look at, SRT may be successful only 30% to 70% of the time. (Green bubble above.)

PCa is Not in Prostate Bed/Pelvis

But if the answer is no, the PCa is outside of the prostate bed and pelvis, that means the PCa is now distant and likely metastasized. If that’s the case, there is no cure and the PCa can only be managed with hormone therapy and perhaps chemotherapy. (Orange bubble above.)

CT and Bone Scans do not Locate the Prostate Cancer

We’ve talked at some length that neither the CT scan nor the bone scan have the sensitivity to pick up the cancer’s location based on my PSA level of 0.21 ng/mL. It was very likely that neither would pick up the cancer at that first decision point on the flow chart, so further investigation is required by using the Axumin or PSMA PET scan.

CT and Bone Scan Results

In fact, neither the CT nor the bone scan picked up the location of the cancer:

No definite scintigraphic evidence of metastatic bone disease and no evidence of a widespread osseous process

So that’s actually good news with the bone scan. It shows that it has not metastasized to the bones, which is definitely a good thing. (Or, at least if there is metastasis to the bones, it’s at a level that’s unable to be picked up by the sensitivity of the scan.)

Next Steps

We follow my red arrows above and run the Axumin or PSMA PET scans (or both) to see if either of those can pick up the location of the cancer. I’ll have that discussion with the urologist on 3 August 2021, and we’ll see when we can get them on the calendar.

If the Axumin and/or PSMA find the cancer in the prostate bed/pelvis, then we go back to the section above and land on SRT as the option. But if it’s found outside the prostate bed/pelvis, then we go back to the other section where we just manage with ADT. (If the lesion outside the pelvis is well-defined, it may be something that could be zapped in its location. Something to explore.)

If the Axumin or PSMA PET scan cannot locate the PCa, then things get fuzzy fast.

Sure, we could go ahead and blindly complete the salvage radiation therapy, hoping that we’re zapping in the correct place. Or, we could continue to monitor for a while longer and then retest to see if the cancer can be pinpointed.

This may have been a bit of an oversimplification of what’s ahead for me, but I’m hoping that it makes sense to you.

Be well!

Day 3,906 – UCLA PSMA Update

It’s been a week since I submitted the form on the UCLA website for a referral for the PSMA PET scan, and I hadn’t heard anything back, so I called them this morning.

When I mentioned that I submitted the form about a week ago, the agent said, “Oh. Yeah. We can’t book appointments using the form on our website. We need to take that down.” Uh. Okay. Good to know.

To schedule the PSMA scan:

  • The referring physician needs to call the scheduling number: +1 310-794-1005.
  • UCLA Nuclear Medicine will fax a referral form to the doctor to complete and return.
  • It will take 24-48 hours to process the returned form.
  • They’ll work with the patient to select a date for the scan.

They are currently scheduling appointments in September, so there’s a bit of a delay which isn’t all that surprising.

Now all I have to do is convince my doctor at the VA to go through the process once we get the bone scan results back. I’m not sure how that will go, but you can bet I’ll push pretty hard to make it happen.

If they insist on doing the Axumin scan at the VA first, I guess I’m okay with that. But if that comes back negative, I’ll really press for the PSMA PET scan. I’m just not all that keen on having all this radioactive juice injected in me over the course of a few weeks.

We’ll see how things go.

Be well!