Well, happy freakin’ New Year and Happy Birthday! <Sarcasm font>
My PSA continued its upward climb from 0.22 ng/mL in October to 0.26 ng/mL yesterday.
Additionally, my PSA Doubling Time fell from 45.3 months to 41.5 months. Still not bad, but that’s including all of my PSA values from December 2017 through present. That may be giving me a false sense of security, so I ran the numbers for just the last two years (February 2020-present), and that PSA Doubling Time is 26.6 months.
What’s really frustrating is that the 68Ga PSMA-11 PET scan just five weeks ago didn’t see anything. Anywhere.
I’m definitely going to have to mull this one over. At what point do the actual PSA value and PSA doubling time outweigh the PSMA PET scan results of not seeing anything? Or do the scan results prevail? I don’t know.
I hope that your 2022 is off to a better start than mine and, yes, I celebrate my 64th trip around the sun this month.
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.
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.
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.
Wow. I just may get this post out on time this month! I tell you, this pandemic thing has really thrown me for a loop when it comes to maintaining some sort of routine. Fortunately (or perhaps unfortunately), I’ve returned to working from the office every day for the last three weeks, and that’s brought some structure back to my life.
It’s hard to believe, but four months have passed since my last PSA test, and I’ll be heading off to the clinic on Tuesday morning. I hope. I haven’t actually confirmed that they’ve reopened for routine things like blood tests. If they are open and they do take the sample, I should have the results late Thursday night or Friday. My appointment to go over the results is on 2 July.
Just as a reminder, here’s my PSA roller coaster:
I’m at the point where I don’t get too worked up about these tests anymore, even with the upward trend. It is what it is and I’ll deal with the number when I get it.
Imaging Trial for Veterans in Los Angeles
The VA Greater Los Angeles Healthcare System is conducting a phase II trial “to determine whether a positron emission tomography (PET)/computed tomography (CT) scan using 18F-DCFPyL affects the clinical management plan in Veterans.” Some are saying that 18F-DCFPyL may prove to be even better than a Ga-68 scan.
For patients with biochemical recurrence, they want your PSA to be at least 0.2 in a post-radical prostatectomy situation, so unless my PSA jumps up again next week, I’m not eligible. (No, I’m not wanting it to jump up.) The cost is free to veterans and only veterans are eligible. You can learn more about the trial here:
I met with the urologist this afternoon—a new one to my case—and he was personable but very direct.
We talked about the goofy PSA reading and he wasn’t all that concerned about it. It appeared to be lab error and dismissed it as pretty much meaningless. But what followed caught me a little off-guard. “The one thing you absolutely do not want to do is start treatment.” He was quite emphatic. His reasoning was several-fold.
First, he talked about over-treatment given my numbers and pathology. He was looking at how long it took for the PSA to return post-surgery (nearly five years) and how slowly it’s been increasing (PSA doubling time / velocity). Those were positive indicators to him. Treatments like radiation and hormone therapy have side effects that impact quality of life and can be avoided with minimal risk for now.
Second, he expressed concern that if we started treatment too soon, specifically hormone therapy, it would be less effective when we may need it the most.
Third, he mentioned the absolute value of my PSA and how imaging wouldn’t be able to detect where any cancer may be at that level. That’s nothing new to me. We talked about the Ga-68 PSMA trial up at UCLA, and he confirmed that at my PSA level, the chances of finding something meaningful were small (<30%).
Finally, he was very much aware that continued monitoring is needed to make sure that this doesn’t get away from us, and he was content with PSA tests every six months considering how slowly the PSA was increasing. I wasn’t quite comfortable with that, so my next PSA test will be in late June with an appointment on 2 July 2020.
I did mention to him the issues I’ve been having with my back and sciatica, and that I had an MRI last night to have that checked out. I’m 99.5% certain that the problem is related to a back injury that happened in 1986, but that other 0.5% of me was wondering if there was metastasis to the spine. He pretty much dismissed that possibility out of hand given where my PSA level is at. (Hey, my mind wanders into some pretty dark corners sometimes, but given that one of the first place prostate cancer likes to metastasize is the spine, it’s not too far-fetched an idea.)
Again, I was a little taken aback by how emphatic he was concerning not pursuing any treatment at this moment. I got the sense that he really values trying to balance avoiding over-treatment versus quality of life versus knowing when to step in and act. For now, I’m comfortable with continued monitoring with another PSA test in four months.
So, I’ll leave you with a little urology “humor” that has men cringing everywhere.
As I was sitting in the exam room waiting for the doctor, I looked over on the desk and saw the tools of the trade—some lubricating jelly and toilet tissue—at the ready for the dreaded DRE. (The rubber gloves were in dispensers hanging on the wall.)
Then I reminded myself that it was a DRE during a routine physical that discovered the mass on my prostate and started this adventure. Thirty seconds of discomfort can save a life.
My last PSA test on 4 February showed a 50% drop in my value compared to the previous test in September 2019, which is a major, unexplained swing considering that I haven’t been doing treatments of any type to lower my PSA. It just didn’t sit right with me, so I asked for a retest.
I went in on 20 February for the retest, and the PSA came back at 0.16 ng/ml, exactly where it was in September 2019. (At least that’s the silver lining in the cloud: it didn’t go even higher.)
We’ll probably never get a good explanation for the dip in my PSA earlier this month, and I guess that’s just part of dealing with this beast. I’m going to leave the errant data point on my chart just to show how wacky this can be at times.
The one thing that this has done, though, is drive my PSA Doubling Time down to 39.7 months according to the Memorial Sloan-Kettering PSADT Calculator (excluding the 0.08 reading). That’s still a very good number, but it’s downward trend over time is becoming more concerning.
I’m really glad that I was able to get the retest done before my appointment with the doctor on Tuesday. It certainly will make for an interesting discussion.
Excited that my PSA value went from 0.16 ng/ml in September to 0.08 ng/ml last week, but completely thrown for a loop as to how and why a 50% decrease happened (without any treatment or other intervention). The last time I was at 0.08 ng/ml was nearly three years ago in April 2017.
I follow the same routine for a week before each PSA blood test to avoid activities that may influence the outcome. The only difference time was that I had a cold/flu the days before the test (Monday afternoon-Thursday evening; blood draw on Friday morning), but I can’t imagine that having any influence on a PSA number. I’ll ask when I talk to the doctor on 25 February 2020.
I tried updating my PSA Doubling Time using the MSKCC PSADT calculator, and this bumped my PSADT from 43 months to 123 months. There is a caveat, though. The online calculator accepts only PSA values of 0.10 or more, so I rounded up my 0.08 to 0.10 to run the calculation.
I get that there can be lab errors or accuracy concerns as well, but I would be hard-pressed to attribute a 50% shift to a lab issue. Still, when you look at the last four data points on my chart, there is pretty significant fluctuation between each and its previous data point when compared to the quite consistent series of data points prior to that. It makes you go, “Hmm…”
Don’t get me wrong. I’m not complaining about where the PSA is at. I will say, however, that these kinds of wild swings make it challenging to wrap your head around what’s happening in order to prepare for what’s next. I was mentally gearing up for calls to imaging centers and radiation oncologists because I was expecting the result to be in the 0.16 to 0.18 range this time around.
So that’s it. A short post with unexpected, somewhat bizarre results. We’ll see what the doctor says on the 25th.
Work is insanely busy for me right now, so this will be a shorter post than usual. (“Thank you!” you say.)
I’m coming to the end of the six months since my last PSA test (and the first six month test frequency in many years), so it’s almost time for my next visit to Dracula. I’m looking at my calendar and I’m thinking that I’ll go somewhere around 7 or 8 October, but anticipation may have me try to squeeze it in a little earlier. Perhaps even the tail end of September. Either way, I have an appointment with the urologist on 22 October to review the results.
I’m not even going to try and predict where the next marker on the chart will land. My spreadsheet failed me wonderfully last time out. As I recall, it predicted a value of around 0.14, and I came in at 0.10. One result at a time…
As a refresher here’s my PSA chart:
Last week, I stumbled across a comment in a Facebook prostate cancer support group that talked about rising PSA, and the author recommended reading/viewing Dr. Charles “Snuffy” Smith’s article, “When Recurrent PCa isn’t Cancer.” Dr. Smith is the editor-in-chief of the website, Prostapedia.
The video was published four years ago, but Dr. Smith seemed to reinforce the notion that my continued surveillance of my PSA without taking other action may not be as crazy an idea as many may think it is (including myself, on occasion). Of course, I’m sure there are plenty of others out there who would argue otherwise, too.
Even though there are a thousand opinions out there, we patients sometimes forget that we really can control our treatment path, as long as we do it in a well-researched and well-thought out way, assessing the risks and rewards. I get to decide what to do in the end. It’s my body and my life, after all.