Day 3,891 – Doctor Appointment & New PSA Results

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.

Stay well, everyone!

Month 127 – PSA Results

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.

Month 124 – Prostate Cancer a Chronic Illness?

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.

That’s about it for this installment.

Stay well!

Month 115 – PSA Time & Imaging Trial for Veterans

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.

PSA Time

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:

 

PSA 20200223

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:

18F-DCFPyL PET/CT Impact on Treatment Strategies for Patients With Prostate Cancer (PROSPYL)

So that’s about it from a toasty 90° F / 32° C San Diego.

Wear a mask. Stay apart. Stay well!

Day 3,394 – Doctor Visit

Well, I didn’t expect that…

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.

IMG_20200225_131804422
Urologist tools of the trade.

Day 3,392 – PSA Retest Results

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.

PSA 20200223I 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.

More to come…

Month 111 – PSA Results Are In

Baffled. Completely and utterly baffled.

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.

PSA 20200207

Month 106 – Almost Time

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:

PSA 20190326

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.

Stay tuned.

Day 3,058 – A Date with Dracula

My local friendly phlebotomist, aka Dracula, just sucked a vial of blood from my arm for the next PSA test. I should have the results online by Friday.

I was impressed. In and out of the clinic in less than ten minutes. Not bad at all.

Here’s where we were the last time around just as a refresher:

PSA 20181203 clean

Day 2,841 – A Chat with the Urologist

I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.

This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.

I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.

I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.

I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.

He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.

One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)

That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)

We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.

Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.

All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.

Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.

So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.

Time will tell.