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.
This is a really interesting (at least to me) video out of the University of California San Francisco (UCSF). Remember that UCSF and UCLA were the two institutions that did considerable work to get the Ga-68 PSMA PET scan approved by the Food and Drug Administration in December 2020.
First, at the 3:04 minute mark in the video, he presents the number of positive scans by PSA level. Interestingly, he references the same study I posted earlier. What differs in this presentation from the other one I posted is that this looks at PSA values <0.2 and from 0.2-0.49, whereas the other study just looked at positive scans for PSA values <0.5. However, something seems off between the two.
In the original study, it showed a positive detection rate of about 38% for PSA values <0.5. In this video, however, the chart appears to show a positive detection rate at the <0.2 PSA level somewhere north of 40%, and a positive detection rate at the 0.2-0.49 PSA level somewhere north of 50%. Perhaps he wasn’t all that skilled at making bar charts in PowerPoint, but something is amiss.
Where I’m encouraged is that it appears that they are, in fact, able to detect cancer at my PSA level or even lower. The only question is, at what rate? I’ll stick with the one in three value for now, which is still better than zero.
I did email one of the doctors on the team at UCSF, and his response was:
There are no guarantees, but there is a chance that a PSMA PET could detect a site of recurrence with a PSA of greater than 0.2. The chance of detection usually increases as the PSA goes up.
Not exactly a ringing endorsement of his own product, but I think that’s more to couch expectations because this is so new and even he is still trying to figure it out. (I admit, I was surprised that he even responded, so I’m thankful for that.)
I’ve got a good list of questions ready for my appointment on Tuesday, and I’m sure I’ll spend some of this holiday weekend adding to it and refining it.
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. 🙂
Last week, I completed my 63rd trip around the sun and had my appointment with my doctor. I tried arranging a tele-appointment, but that didn’t happen, so I had to go into the office for the visit.
I was brought back to the exam room by a staff member, and was told that they were running a bit behind schedule after a post-holiday surge. “No problem,” I said and pulled out my phone to do some mindless Internet surfing as I waited for the doctor to come in. About ten minutes later, the doctor rounded the corner and came through the door, and I’m thankful I was wearing a mask to help hide some of my reaction. (I’m sure my eyes and eyebrows betrayed me to a degree.)
It was Doogie Howser. (Photo from the hospital’s website.)
“Damn, I’m old,” I thought. Well, that, and he was really young. Both can be true. But, as the old adage says, you can’t judge a book by its cover.
Once we began talking, it was clear he was knowledgeable and had a great bedside manner. As predicted, we agreed that the wisest course of action right now, given my PSA level and my PSA doubling time is to continue to monitor. We’ll do this again with a PSA test in June and a follow-up appointment in early July. He was pretty emphatically against radiation. “If you were my brother or uncle, I’d tell you not to do it.” I chuckled at the concept of being his brother.
We also chatted about the PSMA imaging available at UCLA, and he was in the loop on that. He agreed that my PSA is too low for us to get a reliable result right now and also cautioned about false positive results. Right now, that imaging isn’t approved by the VA, so I would have to pay for it on my own if I had it (about $3,000 USD).
I have to admit that’s one thing that I like about having a younger doctor—they seem to be more current on the advances in the field than some of their older counterparts. I asked an older doctor about the PSMA imaging a year or two ago, and he barely had any idea of what I was talking about.
The appointment went just about as expected, so we’ll wait another 6 months and do it all over again.
Here’s hoping for a better 2021 for all of us!
P.S. Along those lines of a better 2021, because my office is in a hospital, I was able to get the first dose of the Pfizer COVID-19 vaccine last week. There were minimal side effects: a mildly sore injection site for about 36 hours and a bit of a headache later in the evening. Nothing bad at all. I go back to get the second dose at the end of January.
I stumbled across this page/video, PSMA PET/CT- Struggling with Increased Sensitivity, of a presentation about bringing Ga 68 PSMA PET/CT imaging online from the Society of Nuclear Medicine and Molecular Imaging (SNMMI) Annual Meeting. It’s definitely worth the 23 minutes to watch it if you have any interest in imaging for prostate cancer.
Ga 68 PSMA PET/CT scans definitely can see much more than current imaging technologies and is fast becoming the new “gold standard” of prostate cancer imaging. But, as with anything new, there are things we have to understand to use the technology to its full advantage and to not misinterpret what it’s telling us.
One of the statements in the presentation that struck me was, “Just because you can see it, doesn’t mean you should treat it.” The presenter described the following scenario:
“So this is a patient who’s eight years after a prostatectomy with rising PSA and when the gallium PSMA PET scan is done, we see focal intense uptake in a solitary mesorectal node, which measures two to three millimeters and we’re really seeing micro metastatic disease. And I think the title of the slide is just because you can see it, doesn’t mean you should treat it because we don’t know how long that lymph nodes been there for. This is not in the classical nodal dissection. This lymph node could have been there five years ago and maybe it hasn’t changed and we don’t know that. So it’s easy now to say let’s cut it out because we can see it or let’s give it stereotactic radiotherapy, but I look at an image like this and think if it’s taken eight years for this lymph node to get to two to three millimeters, this is extremely indolent disease and perhaps it’s best left alone.”
He also talked about early interventions taken as a result of the PSMA PET/CT scans that may have caused more problems for the patient than necessary without changing the outcome (i.e., continued recurrence after the procedure).
Again, I found this to be very enlightening as I’m heading into my appointment this week and considering going to UCLA for their PSMA trial.
One of the cool things about working in a hospital is that I can access full versions of some of the scholarly articles on prostate cancer that are normally blocked to the public by their publishers. At the end of the day today, I pulled the full versions of each of these articles for a little light bedtime reading about salvage radiation therapy, toxicities, and imaging:
I skimmed a couple of them on the bus ride home this evening (as much as you can skim on a bouncing bus), and I’ll go through each in a little more detail before my appointment a week from tomorrow.
When I pull articles like this, I consider a few things when reading them:
When was the article published? Obviously, more recent is generally better, although you can’t discount data from earlier studies entirely.
What type of research was done? Was it a retrospective study of historical medical records or was it a full-blown trial?
How many patients were included in the study? Fewer patients (<100) may yield less reliable results than those that include several thousand.
Over what time period did the study look at patients? Studies that looked at records from the 1990’s into the early 2000’s will reflect the treatment options and technologies available at that time. Studies done more recently will reflect the impact of newer treatment options and technologies.
Who conducted or funded the study?Who’s conducting a study and how it’s paid for could, in theory, perhaps skew the results (e.g., Big Pharma wanting to push a new drug).
So I’ll be going through each article, gleaning whatever I think may be of value for the appointment, adding to my list of questions to be asked.
Please don’t ask me to share the full versions of the articles here or elsewhere. Not only am I cancer-averse, I’m litigation averse. I’m not keen on a copyright infringement lawsuit because I posted something on this blog/website that I didn’t have permission to do. 🙂
That said, I may try to summarize some of the findings in future posts, with full attribution of any quotes, of course.