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.
The administrative logjam between VA Medical Center San Diego and UCLA may have been broken this morning.
Yesterday, I called UCLA to see if they could access my health record through the Veterans Health Information Exchange, and the short answer was “no.” While I had them on the phone, I asked if they would accept printouts of my medical records from me and, again, the short answer was “no.” They had to come from the doctor’s office. Ugh.
Not being one to always listen to what I’m told, I went ahead and sent my demographics and insurance information to UCLA on my own. I also hopped onto the VA website and submitted my official Request for Authorization to Release Health Information form so they could send my medical records to UCLA.
Within about an hour and a half of submitting the request, I had a call from the woman processing it. She had a couple of questions that I answered. “Great. I’ll fax this to them right now.” That was not the response I was expecting. I thought the VA would take 3-5 business days to pull the records and send them.
When I spoke with UCLA on Monday, they did mention how slammed they are with requests for PSMA PET scans, and that it may take a few days to process the paperwork on their end once it was received. I’ll give a call on Thursday or Friday to follow up and see if they have everything they need. With luck, they will and we’ll be able to get the scan on the calendar.
The scheduler said they were currently scheduling for late November right now.
Fingers crossed that everything will be in order and I’ll be able to get a scan on the calendar.
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.
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.
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.
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.
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.
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.
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.