I found this to be an interesting article about the PSA test and all the controversy that comes with it and its use.
As someone who has lived with PSA tests in their life for eleven years, I can relate to much of what she’s said in her article. Just read through this blog and you’ll see that PSA anxiety is a very real thing.
But in those eleven years, I’ve also learned that the PSA test is merely a tool used to give you a data point. It’s just one of many data points that should be used in your decision-making process, either before initial treatment or after. Like any tool, you must be trained on how to use it properly.
There is no such thing as a “good” cancer. However, I do believe that prostate cancer is far more nuanced than many other cancers. When you hear those three words, “You have cancer,” the near universal response is, “Get it outta me! Now!” But with prostate cancer, that many not be the appropriate response in some cases. That’s where patient education at diagnosis has to become much better. It’s a huge paradigm shift for a cancer patient—and even some medical professionals—to realize that doing nothing (aside from routine monitoring) can be an option in certain cases.
That’s something that I’ve learned over the years.
I’ve been blessed to have a type of prostate cancer that has been so slow growing that it’s allowed me to be around for eleven years after diagnosis. Would I do anything differently? I may have postponed my surgery a little longer to watch what my PSA was doing over a longer period to establish a trend. However, given that the doctors felt a tumor during the digital rectal exams, that told me that I was dealing with something more than a few random cancer cells. There was a mass, and it needed to come out.
Obviously, I’ve made the choice to monitor as my PSA has slowly increased over the last six years since becoming detectable again, even though some were quick to recommend salvage radiation therapy. With luck the PSMA PET scan on 30 November will reveal whether that was the dumbest decision of my life or whether I may be able to continue on my current plan of doing nothing but monitoring or whether it’s time for salvage radiation.
Lastly, a few other things that I’ve learned in the last eleven years is that every patient’s case is unique and that even the medical professionals can’t always agree on the best course of action. You just have to do your own research and go with the best information you have available to you at the time. It’s your body, your life, your choice.
No surprises here. My PSA went up slightly again from 0.21 ng/mL to 0.22 ng/mL. The only surprise was that I was able to get the results online a day earlier than usual
This also dropped my PSA Doubling Time from 48.1 months to 45.3 months. Not a biggie there, either, but still moving in the wrong direction.
UCLA also required a basic metabolic panel be done in advance in of the PSMA PET scan, so I got that knocked out, too. I’m supposed to bring a copy of the results to the scan and now I can print them out and not rely on the administrative gremlins to get them to me.
My appointment with the urologist is on 9 November and we’ll see how that goes.
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.
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.
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.
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.)
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.
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.
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).
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.
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.
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. 🙂
I went for my originally scheduled six-month PSA test last Thursday and was able to look online last night to see the disconcerting results: A substantial increase to 0.21 ng/ml.
Breaking the 0.2 ng/ml threshold now officially puts me into the biochemical recurrence category, at least according to the long-held definition of biochemical recurrence.
Needless to say, I felt gut-punched on seeing the results. Sure, I’ve know for over five years that my trend has been upward, but I guess I got comfortable with it bouncing around the 0.10 to 0.16 range for the last few years. I wasn’t expecting such a substantial leap between my “surprise” PSA test in February and this one in June.
When it comes to PSA doubling time, it dropped from 67.7 months to 52.8 months with this latest test result included in the calculations. If I look at only the five most recent test results, the PSA doubling time drops to 46.5 months. Of course, all of those are great numbers that a lot of guys would like to have.
My appointment with the doctor isn’t until 6 July, and it will be an interesting conversation now that we’ve crossed that magical line of 0.2 ng/ml. In a way, I’m glad I’ve got several weeks to think this through and to come up with good questions to ask so that I’m prepared for the appointment.
Of course, salvage radiation therapy just moved to the top of the list of things to talk about. It will be interesting to see if their recommendation changes given the 0.21 number versus the long PSA doubling time.
Needless to say, there’s going to be much reflection and research in the weeks ahead.
It’s tough to come up with a decent prostate cancer-related topic for this month. I guess when things are going relatively well, that’s a good thing.
I’ve gotten to the point where I think of this more as a chronic illness like arthritis than I do a potentially life-ending cancer. Last month’s bump up in my surprise PSA test hasn’t fazed me at all. It is what it is. Move on. Maybe that’s a mistake.
I will say, though, that I’ve probably packed on a couple of pandemic pounds over the last twelve months of quarantine and work from home and, when that happens, I tend to see a slight uptick in minor incontinence episodes. Nothing major. A little dribble here, a little dribble there. More a nuisance than anything. Time to get more active and shed a few of those pounds.
Speaking of getting active, I did just that after my last post. I took my first ever trip to Death Valley. I figured if I can’t socially distance there, where can I socially distance? It’s a remarkable place. Going in February is one of the best times to go. Temperatures were in the low 70s °F/ 20s °C during the day and around 45 °F/7° C at night. Not bad at all.
After visiting Death Valley, I drove to the Valley of Fire just about an hour northeast of Las Vegas. That was amazing as well. If you’re looking for a diversion, you can check out my write-up and photos HERE. My apologies for the slow-loading photos. I uploaded the full resolution versions, but if you zoom in on any of them, the detail is incredible.
I’ve got King’s Canyon/Sequoia and Yellowstone National Parks on the agenda for later this year barring any massive changes in the pandemic status. Once this is all lifted and international travel is allowed again, New Zealand has made it to the top of my bucket list. Fingers crossed.
“How the hell did you have a surprise PSA test?” you ask. “Didn’t you feel the needle going into your arm?!?”
Yes, I did.
I was a bit overdue for the normal tests that you have for your annual physical, and my doctor’s office called a week ago and told me I needed to come in for some blood work and a urinalysis. So I did.
I was going through the results online today, and the very last test listed was a PSA test. I was a bit surprised that they ran it considering we just ran one in December. The result? It came out 0.16 ng/ml.
Obviously, that’s a step up from the December result of 0.13 ng/ml, but I’m not overly concerned about it because it’s relatively in line with my other recent results. The other reason is that I didn’t follow my usual routine for this PSA test.
When I know that I have a PSA test coming up, for a week before, I will abstain from activities that could cause it to read a little higher than normal. Because this was a surprise test, I didn’t do that and that may account for the bump up in the number.
Another reason not to be too overly excited is my PSA doubling time is 65.3 months.
Of course, because this was an unexpected test, I don’t have an appointment set up with the urology department, so we’ll just stick to the plan and see what happens when I retest in late June for an early July appointment.
On an unrelated note, because I work in a hospital, I was able to get both doses of the Pfizer COVID vaccine.
For the first dose, my arm was tender at the injection site for about 30 hours after the injection, but it wasn’t bad enough to warrant taking any pain medication like acetaminophen or ibuprofen. I had a mild headache late in the evening, but I may attribute that to just being up too late the night before.
The injection site for the second dose was less tender and for a shorter period, but I was pretty fatigued later in the afternoon and early evening (I received the injection around 10 a.m.). Nothing a good nap and a good night’s sleep wouldn’t cure.
It will be two weeks since the second dose this Friday, so I should have full resistance built up by then. I’ll continue to wear a mask and socially distance, as is recommended.