No definite evidence of locally recurrent or metastatic disease within the abdomen or pelvis.
(If you don’t know, BLUF = Bottom Line Up Front).
There was one 9 mm kidney-shaped lymph node that caught their attention, but didn’t think it to be remarkable.
They also commented on a bunch of my other organs and bits and pieces, but nothing seemed too out of the ordinary for any of them aside from a few dents and scratches from 63+ years of normal wear-and-tear and countless miles/kilometers.
The fact that the CT scan didn’t pick anything of substance up is a good thing and a bad thing. Good because it didn’t see anything; bad because it didn’t see anything. The likelihood of it detecting the lesions at my PSA level were small, and we knew that going into this. So even though we didn’t see anything, that doesn’t necessarily mean that it’s not there.
I did get a chuckle out of one line in the report:
Multidetector CT abdomen/pelvis was obtained after the uneventful administration of intravenous contrast.
Uneventful for who??? The radiologist? Sure. I did everything in my power to not puke all over their $300,000 scanner. 😲
I expect we’ll have the same result with bone scan next week, but time will tell.
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.
You’re the person who gave the 1,000th like on my blog!
I wish I could give you a prize like a trip to your dream destination or a cure for this pesky disease but, alas, I don’t have a magic wand to make either happen.
But to everyone who’s followed along and liked the content, thank you!
You know me. I love tracking things, and this post is the 400th published post on this blog. Woo-hoo! 🎈🎉✨ Of course, I would have preferred to not have written any of them at all, but that’s life.
I thought I had had a CT scan in the past, but if I did, I don’t remember it being anything like what I experienced today. It kicked my ass. Technically, it was the contrast they injected into me that kicked my ass. The scan—sliding in and out of the scanner—was a non-event.
The radiologist forewarned me of the sensations that I would experience shortly after he injected the contrast. The sensation of a full and warm bladder? Check. Metallic taste in my mouth? Check. A warm sensation throughout my body? Check.
What he didn’t do a very good job of was forewarning me of the intensity of the some of these things. At one point, I thought I was going to vomit like Vesuvius. It was awful. As soon as he stopped the IV flow of contrast, I could feel some of these side effects dissipating. (But not nearly as quickly as they came on.)
I didn’t even bother to ask the technician if they saw anything odd on the scan as they were running the test. I’ll usually do that because sometimes, if you’re lucky, the technician will help you out. They may not be able to be all that specific, but I’ve had one or two tell me, “You really don’t have anything to worry about.” I was just more focused on getting out of there without puking.
The whole appointment went like clockwork and went faster than I expected. My appointment was for 2:30 p.m. I pulled into the parking garage at 1:45 p.m.; was checked in a Radiology by 2 p.m.; on the scanner bed by 2:10 p.m.; and headed back to my car by 2:35 p.m. Again, I know there are tons of complaints about the VA healthcare system, but San Diego VA Medical Center has been top-notch as far as I’m concerned.
The radiologist thought they would have the full results available by Friday.
I’ll have to admit that on my commute to work this morning, I had a bit of a knot in my stomach. Not because I was afraid of the scan (now I am—a little), but because this is the beginning of the process that will give me results I may not want to hear.
On a related note, my employer-provided healthcare insurance did confirm that the Department of Nuclear Medicine at UCLA is in network, so that’s a good thing.
What’s next? Here’s an estimated timeline:
Get online access to CT Scan results sometime this weekend or early next week.
Have the bone scan on Friday, 23 July.
Get online access to bone scan results 3-5 business days after the scan.
Have a follow-up appointment to review both scan results with the urologist on 3 August.
I’ll contact UCLA to start that process and hopefully have all of my homework done in time for the appointment on 3 August.
Well, time to drink a few liters of water to purge that contrast out of me.
“It’s been a quiet week in Lake Wobegon, my hometown…”
Yeah, right.
There’s really nothing new to report regarding the PSMA PET scan and insurance coverage. I’m still awaiting explicit clarification that I will be covered and that UCLA is in-network. More to come.
What I do want to talk about in this month’s post is some of the resources that I routinely use to do my research on all of this. There are a few that I believe have high quality, easy-to-understand information for patients, and there are a few that keep you informed of the latest research and treatment options.
As you’ve seen in a few of my recent posts, I’ve been a little late to the game in terms of finding some very educational YouTube videos that talk about prostate cancer and treatment options. I may create playlists of videos that I’ve saved on the YouTube account associated with my contact information.
Prostate Cancer Research Institute
The Prostate Cancer Research Institute is a wealth of information that’s presented in such a way that patients and their partners can easily understand. My only criticism is their color-coded staging system that they use. I believe they created it thinking it would simplify things, but it’s not used beyond PCRI (as far as I can tell), so it can be quite foreign initially.
PCRI’s videos are short and packed with information. They also answer a number of the more common viewers’ questions left in the comments.
Lastly, they do have a patient helpline that you can access either online or via phone. They were pretty timely in their response to an online question that I submitted.
The New Prostate Cancer Infolink
The New Prostate Cancer Infolink is a great source of information regarding current research on a variety of prostate cancer-related topics. The website isn’t the most aesthetically pleasing, but there is a wealth of current information available. Some of it is a bit on the technical side, but most of the posts include links to the specific research articles they mention. That can be handy if you’re the type of person who likes to read that stuff. (Hmmm… Remind you of anyone in particular???)
I’ve found that the authors are generally responsive to comments or questions left on the post.
Other Resources
You can check out the Resources page on my blog to learn about a number of other resources. Some are quite general in their approach to educating patients, some are a bit more specific, and, sadly(?), some to be more focused on fundraising than patient education. Don’t get me wrong, Funding research is critically important. It’s just that you may not find some of the detailed information you’re seeking on those sites.
The other thing that’s interesting is how each major organization interprets the same topic and provides oftentimes differing information between organizations. Welcome to the frustration of prostate cancer research. I tend to look for the commonality between the information being shared, and that tends to reinforce that it’s a more widely accepted approach.
Lastly, I always look at the “freshness” of the articles or papers that I’m reading. Were the written in 2020, or in 1997? That can make a significant difference, too. When you’re looking at retrospective studies that tracked patients for 7, 10, 15, or more years, you have to remember that treatment technologies and methods have changed in those periods of time. So the statistics you’ll see in the report may be slightly biased because of their age and the changes in the field of prostate cancer management.
Of course, always be wary of prostate cancer blogs written by crazy, bitter old men sitting around in their underwear on their computers… Be especially wary of #13 and #26 on this list. 😂
Research Pays Off
Yes, researching prostate cancer can be absolutely maddening but, if you do it correctly, it will pay off in the end. It makes you a much better educated patient, and you can have far more credibility and influence with your medical team than if you’re just along for the ride. And if you think the doctors don’t notice, they do. Here’s my doctor’s notes from my last visit:
Very well informed about his disease. Uses MSK nomogram. He brings an article regarding68Ga-PSMA 11 PET scan. He reports that if PSA is truly at 0.21 that he would like to complete, even if he needs to pay out of pocket. He is involved with support groups and has a blog Dansjourney.com
I was a little disappointed, however, that there was no ⭐. 😂🤣😂
Okay. Enough silliness. Time to put my pants on, step away from the keyboard, and enjoy the 75° F / 24° C San Diego day.
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.
Anticipation for this appointment really did a number on me for some reason. I was nervous to the point of feeling queasy as I was driving to the San Diego VA Medical Center, which is quite unusual given how many times I’ve done this. I guess that this was different because my PSA had broached that dreaded 0.2 ng/mL mark.
Okay. I started this post (above) while sitting in the waiting area waiting for my appointment, and afterwards, my plan was to sit down at home this evening and summarize what we discussed. But the doctor just called a few minutes ago with some information that completely changes how I’m going to approach this post.
PSA Results
In a nutshell, one of the things we discussed was re-running the PSA test to see if last month’s 0.21 ng/mL was a real reading, or if it was an anomaly like the February 2020 drop from 0.16 ng/mL to 0.08 ng/mL. She even asked me if I had had an orgasm or rode a bicycle or did other similar activities before the June test. I had done none of those.
I asked to have the test re-run for peace of mind and she put the order in the system. She said that she should be able to see the results later this afternoon before they’re posted online, and instructed me to call her later in the day. She just returned my call with the results: my PSA came in at 0.21 again, confirming the June result. (You can also see that my PSA doubling time dropped to 48.1 months from 52.8 months in June.)
Note the addition of PSA doubling time to the chart in red, showing the PSA doubling time in months (right axis). [Click chart to enlarge.]
I’m not pleased that I’m hanging out in the 0.21 range, but I am pleased to have the confirmation. Now we know what we’re dealing with.
Plan A
During the consultation, we talked about possible courses of action. The first was to get the results and, if they were still hanging in the 0.16-0.18 range, we’d continue to monitor, perhaps bumping the frequency of PSA tests to three or four months instead. Obviously, that plan got tossed out the window.
Plan B
If the PSA came back with a confirmatory value, we agreed that scans to try to locate the cancer would be an appropriate next step. That was a great opening for me to talk about the Ga-68 PSMA PET scans at UCLA, but more on that later.
One thing that I’ve noticed in my years of being cared for at the VA Medical Center is that they do seem to be a tad slower to embrace some of the new technologies, definitions, and treatment options that are out there. Their protocol for someone in my situation is a bone scan in combination with a CT scan, so that’s what I’ll be calling to arrange tomorrow.
I argued that it’s very unlikely that the bone scan will pick up anything at my PSA level, and my doctor’s response was that we might be surprised. Ditto for the CT scan. If both scans are negative, the protocols would allow us to proceed to an Axumin PET scan done at the VA Medical Center. If the Axumin PET scan came back negative, then we may be able to figure out a way to get the PSMA PET scan at UCLA.
Of course, my preference would be to go straight to UCLA and skip the bone, CT, and Axumin scans altogether, but if those are the protocols that may get me answers I’m seeking, then I guess I need to follow them. Even so, I may try to push for the PSMA PET in place of the Axumin (I even mentioned to her that I may be willing to pay for it myself if the VA and my own insurance didn’t cover it).
General Conversation
One of the questions that I asked was about when the actual PSA value trumps the PSA doubling time when it comes to deciding to take action. Clearly, each case is unique and there is no definitive answer, but my doctor’s take on it was that she wouldn’t let a PSA go above 1.0 ng/mL without taking some action.
She did, however, bring up the fact that it’s becoming more widely accepted to do exactly what I’ve been doing—continuous monitoring. Too many patients are being overtreated with salvage radiation therapy with no guarantee of it being curative. She referenced how the American Urological Association (AUA) and National Comprehensive Cancer Network (NCCN) guidelines have been evolving over the years in a way that supports monitoring over action in some cases.
When I brought up the Ga-68 PSMA PET scan, it seemed that I may have been a little more up to speed on the topic than she was. We talked about it being FDA approved at UCLA and she reminded me that, just because it’s approved doesn’t mean it’s covered under the VA or private insurance yet. I agreed, and that’s when I mentioned I may be willing to pay for it myself.
I brought a hard-copy of this paper on the Ga-68 PSMA PET scan and left it with her for her review. We also reviewed the chart showing what the scan was picking up at various PSA levels, and where it was picking it up.
I found it interesting that one of the first things she looked at with the paper was who the authors were. I guess quacks write papers, too.
Final Thoughts
It’s been one helluva weird day, that’s for certain. It started with me feeling uncertain and queasy and, in a bizarre twist, I feel as though I’m ending it on a high note.
Sure. No one wants to have recurrent cancer. It sucks. But now I feel the uncertainty brought on by PSA results bouncing around for the last six years is finally coming to a close, and I can really begin to focus on what happens next. There’s a sense of direction, albeit down a path none of us would like to go down. (Yes, there’s lots more uncertainty ahead, I’m sure, but I’ll cross that bridge when I get to it.)
Tomorrow I’ll call to get the bone and CT scans set up and, once we know the dates, I can arrange a follow-up appointment to review the results.
If they come back negative, then we try the Axumin or PSMA PET scan if possible. Of course, I’ll be doing some reading on Axumin scans in the interim (I really haven’t focused that much on them as an option, so I need to learn more about them).
Having cancer sucks. Having more definitive information doesn’t.
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.
Dan's Journey through Prostate Cancer 