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.
I just received a quick update from my health insurance company regarding coverage of the Ga68 PSMA PET scan at UCLA—the quick turnaround surprised me. It appears to be good news, but it was a little squishy, so I had to ask for confirmation of a few things.
In their email to me, they listed the contractual amount that they would pay out for each CPT code that I gave them, but that’s all they said. It sort of implies that I’m covered, but it doesn’t say so explicitly. Needless to say, when dealing with insurance companies, I want things to be very explicit without any loopholes.
I just sent them and email asking them to:
Confirm that I am covered under my employer-provided healthcare plan.
Confirm whether or not UCLA Department of Nuclear Medicine is considered to be in-network or out-of-network (different deductibles).
Hopefully, I get that confirmation early next week and can share the information with my doctor.
My health insurance company replied to my email with more questions than answers, which was okay by me because they were trying to learn more about the Ga68 PSMA PET scan at UCLA.
First, they were looking for the Current Procedural Terminology (CPT) codes that would apply to the imaging. I didn’t know what those were, so I had to do a little searching:
Current Procedural Terminology, more commonly known as CPT®, refers to a medical code set created and maintained by the American Medical Association — and used by physicians, allied health professionals, nonphysician practitioners, hospitals, outpatient facilities, and laboratories to represent the services and procedures they perform. No provider of outpatient services gets paid without reporting the proper CPT® codes.
I was able to schedule my bone and CT scans this morning with considerable ease. In fact, things will happen much sooner than I thought they might. My CT scan is scheduled next Wednesday, 14 July, and my bone scan is scheduled Friday, 23 July.
I have to go for some pre-scan lab work tomorrow afternoon to ensure that my kidneys are working fine and won’t be damaged by one of the contrasts.
I haven’t given up on the Ga-68 PSMA PET scan. In fact, I wrote my health insurance company an email about 4:30 a.m. as I tossed and turned. (Last night was hell. If I slept more than 2 hours—non-consecutively—that was about it.) They tout having a response within 2 business days, so we’ll see if they come through with that.
UCLA is out of network for my insurance company, so I’d have to cough up 40% of the cost if they’re going to cover it at all. I’m okay with that. (For my overseas readers, welcome to U.S. health care systems!)
So that’s the latest and greatest. More to come, I’m sure.
I came across this video highlighting Ga68 PSMA PET imaging from the doctor at the University of California San Francisco who helped with developing this imaging technique. It’s a bit long and a bit technical in some places, but gives a good overview.
Today was a tough day. The news of my PSA increasing to 0.21 ng/ml weighed heavily on me throughout the day. It even made me a little snippy in a meeting this morning, as my tolerance for trivial bullsh*t decreased to an all-time low. Oh well. They’ll get over it.
Long-time readers of this blog already know that I’ve delayed starting salvage radiation therapy because I’m reluctant to incur the short- and long-term side effects of radiation without having a higher degree of confidence that we’re actually zapping in the correct location(s)—zapping the cancer itself.
Of course, the current state of imaging for prostate cancer generally sucks, but it is getting better with advances like PSMA PET scans using 68Ga-PSMA-11 where prostate cancer can be located much earlier and much more accurately than using previous technologies such as bone scans. But even 68Ga PSMA PET scans have their limitations.
One of the greatest challenges (gambles?) in deciding when to start salvage radiation therapy is the timing. Most will argue the earlier, the better. Statistics show that in most cases, the cancer is still in the prostate bed or pelvic region, so the radiation oncologists start blindly zapping those regions hoping the statistics are correct. But the cancer could have already spread to more remote locations.
With my PSA doubling time in the 4-5 year range, my team and I have decided to hold off on salvage radiation therapy and, in so doing, I’ve avoided any radiation side effects for five years giving me a high quality of life during that time. That has value to me. Of course, none of us know whether the little buggers have been hanging out in the prostate bed during that time (like statistics would show), or if they’ve gone on one of their own infamous road trips and have started spreading.
One of the things that I’ve been trying to determine for months now is at what PSA level can the Ga68 PSMA PET scan begin to reliably pick up prostate cancer. The answer typically was in the 1.0 to 2.0 range for the PSA. With a PSA a fraction of that (0.21) the PSMA PET scan really wouldn’t be a reliable tool for me yet. It’s not a completely worthless tool, but there are decent chances that I could come away with a false negative result.
The chart below taken from the paper was exactly what I was looking for and more. First, it shows the number of cases where patients with an increasing PSA after prostatectomy have positive results based on their PSA level. For those with PSAs less than 0.5 ng/ml (me), the number of positive cases was only 38%. In other words, there’s about a one in three chance that the Ga68 PSMA PET will be able to locate the cancer at that PSA level. Not good odds, but better than zero.
To me, the really interesting thing about this chart is that it shows the location of where the PSMA PET scan found the cancer by PSA level.
You can see that more than half of the cancer in patients with PSAs below 0.5 were found either in the prostate bed or pelvic region, both of which should be very treatable with salvage radiation therapy.
However, once the cancer is in other the other regions—extrapelvic nonbone (other organs), bone, or multiple regions—the cancer becomes very difficult if not impossible to treat. At that point, it’s only managed.
Please keep in mind that those are my non-expert opinions that I will have to confirm with my medical team to make sure I’m interpreting things correctly.
You can see that, as your PSA increases above 0.5 ng/ml, the cancer was found more broadly in the study participants. By that, I mean the cancer had spread beyond the prostate bed and pelvic region. You can also see, however, that even with PSAs less than 0.5, the cancer has already spread elsewhere in about 40% of the patients in the study with that PSA level.
That’s the whole point of knowing this. If the cancer has already spread, there’s no sense in zapping the prostate bed or pelvis risking long-term radiation side effects adversely impacting quality of life for no gain whatsoever.
This is only one study with 635 patients, so I am taking the results above with a healthy dose of skepticism, and I’ll continue to do more research in the three weeks before my appointment. But this study will be a good conversation opener for the consultation.
Some of the questions that are on the top of my bald head are:
Should we run another PSA test to see if this was an outlier/anomaly like some of my previous PSA tests (I’ve been using the same lab all along)?
How much weight does PSA doubling time have now that we’ve crossed the 0.2 ng/ml threshold?
Would he support getting the Ga68 PSMA PET scan done at this PSA level?
If not, at what PSA level would he support getting the PSMA PET scan?
Would he be willing to give me a referral to get one done even if I have to pay for it myself?
Fortunately, the US Food and Drug Administration approved the Ga68 PSMA PET scan at the University of California Los Angeles (UCLA), and that would be a 2.5-3 hour drive for me to get up there to have the scan.
In the meantime, I’m going to have to reconcile in my own mind how high I’m going to let my PSA get before taking action, scan or not.
Lots of research, thinking, and soul-searching ahead. But be forewarned: My trivial B.S. tolerance level is way less than my PSA. 🙂