Day 3,943 – Referral Ping-Pong

Well, that was disappointing.

UCLA did, in fact, receive the referral form from my doctor at San Diego VA Medical Center, but it was incomplete. They sent it back to be filled out correctly this time because they can’t schedule the scan without all the information.

You know me… Of course, I sent an email to my buddy at the VA informing him of the situation and asking him to advise me when the corrected, fully completed of the form is returned to UCLA. We’ll see how that goes.

The saga continues…

Have a great weekend and 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 3,908 – Bone Scan

Today was the day for my bone scan, with two appointments to make it all happen.

The “Juice”

I had a 10:15 a.m. appointment to get the radioactive juice (oops, contrast) injected into my system so that it had time for the scheduled 1:45 p.m. scan.

I’ve learned over the years that you have to have a little fun with those sticking needles into your arm, so I asked the nuclear medicine technician, “Has anyone ever started belting out Debbie Boone’s You Light Up My Life as you inject this stuff?”

He looked perplexed, but was old enough to know the song I was referring to.

“Uh, nope. You would be the first.”

“There’s no way I’m singing. I clear dogs from a three county radius when I do.”

He chuckled, turned the valve on my IV, and let the juice “light me up.”

The cool thing was that I checked in at the front desk at 9:50 a.m. and was walking out of there at 10:15 a.m., the time of my appointment. All done.

The Scan

As I was leaving the morning appointment, the tech told me to drink plenty of fluids, and to come back at 12:45 p.m. instead of 1:45 p.m. Not a problem.

As we walked back to the scanner, he said, “Let’s get some pictures.”

“Oh. Just like my high school yearbook, except those were taken using a Daguerreotype camera.”

Without skipping a beat, he chimed in, “By Matthew Brady?”

Of course, being a native Illinoisan with an affinity for all things Abraham Lincoln and, to a lesser extent, the American Civil War, that resonated with me. [For my international readers, Matthew Brady was a photographer who pioneered photojournalism during the Civil War, and took a number of portraits of President Abraham Lincoln.]

That caused me to relay a story of when I was working at the San Diego Natural History Museum, and, when a kid learned I was from Illinois, he asked, in all earnestness, “Did you go to school with Abraham Lincoln.” Ouch!

As far as the scan was concerned, it went well. Strap me in, slide me in, and poof, we’re done in about 45 minutes or so (I never really looked at the clock to time it). But he did want to get a second run of my pelvic region. Apparently, my bladder filled with radioactive juice and he didn’t have a clear image of what was going on. After a quick trip to empty my bladder, we got a much better view.

Of course, I had to ask, “Did you see anything like Petco Park lit up at night?” [Petco Park is the baseball stadium for the San Diego Padres professional baseball team.]

He reluctantly deferred to waiting for the doctor’s interpretation, but then he offered, “I didn’t see anything.”

“Good. I won’t hold you to that,” I said.

I’ll start looking for the results online over the weekend and will post when I read them.

Have a great weekend and 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!