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.

The New York Times: Debating the Value of PSA Prostate Screening

So I’m sitting in the waiting room at the doctor’s office scrolling through the news on my phone and this pops up. Go figure.

The New York Times: Debating the Value of PSA Prostate Screening.
https://www.nytimes.com/2020/02/24/well/live/prostate-testing-PSA-cancer-screening.html

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 110 – Getting Older

Years ago when I was in my late 40s, I was on one of my infamous road trips through the U.S. Deep South—Mississippi, specifically. I stopped for lunch at a fast food joint, placed my order, and was surprised by how cheap it was. When I got to my seat, I looked at my receipt and it showed “Senior Discount.” I was in my 40s, for crying out loud! I know I didn’t look that old.

Now, about 15 years later, I’m seeking out senior discounts. Or at least one in particular.

In the United States, when you turn 62 years old—as I did last week—you can purchase a lifetime pass that gives you access to all of our national parks for a one-time fee of a mere $80. Within a few hours of turning 62, I was in possession of my lifetime pass. Sweet! Now, I just have to make the time to use it.

My sister came out from Chicago to celebrate my birthday, and it was good to be able to spend some quality time with her, showing her some of the more popular sites in sunny San Diego. She, of course, enjoyed escaping the Chicago winter, even if it was just for a long weekend.

So there are some perks to making one more trip around the sun each year as we grow older. It doesn’t always seem that way on days when joints ache and memory slips a tad (now where are those keys again??), but it certainly beats the alternative.

I’ll be back to reality with my next PSA test in early February. Until then, you may find me in a national park someplace. (Yes, even Death Valley. It’s on my bucket list and now is the time of year to go.)


I’ve been a bit remiss in following my regular posting schedule the last two months. I’ll work to get back on track, posting on the 11th of each month. (Unless I happen to be in a national park.)

 

Day 3,248 – PSA Results

I jumped the gun and got my PSA test done about a week earlier than I planned. I had a  appointment scheduled on Monday to follow-up on my thumb surgery back in February , and I thought I would kill two birds with one stone and get the blood drawn after my appointment.

About 9:00 a.m., the doctor that I had my 1:30 p.m. appointment with called to check in and see how I was doing and if I really needed to come in. “How’s your thumb?” “Still attached and working,” I replied. After a brief discussion in more detail, we mutually agreed that there was no need for me to come into the office.

That kind of put a damper on my getting two birds with one stone, but I decided that I would go to the lab anyway, as I had already planned the afternoon off. It just made sense.

I wish I hadn’t.

My PSA took a considerable jump up to 0.16 ng/ml. I wasn’t expecting that.

PSA 20190930

The trend function on my spiffy spreadsheet thought it would come in around 0.137 ng/ml so that’s kind of where I had prepared myself to be mentally.

I used the Memorial Sloan Kettering PSA Doubling Time calculator to recalculate my PSA doubling time (it uses values of only 0.10 ng/ml and above), and my PSADT dropped from 155.6 months to 43.1 months. Still a respectable number, but definitely moving in the wrong direction.

Needless to say, this sucks.

My appointment with the urologist is on 22 October and we’ll definitely talk about imaging possibilities and ask for another referral back to a radiation oncologist to discuss salvage radiation therapy.

Crap.

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.

Month 105 – Skipped PSA and Imaging News

Last week was a little weird for me. If I had kept to my four-month PSA testing cycle instead of the new, agreed upon six month cycle, I would have gone to the clinic and had Dracula siphon off another vial of blood. But I didn’t, and it felt pretty comfortable with that. Still, a little voice in my head wondered what my current PSA level is, but in a non-panicky kind of way. More in just a plot-the-next-data-point-on-my-chart kind of way.

I’ll go for the PSA test in late September or early October. My schedule that time of year is a bit crazy, so I need to carve out a date and time and get it on my calendar.

It’s hard to believe, too, that in a few weeks it will be four years since my PSA became detectable again. With a calculated PSA doubling time of over 150 months, I’ve been pretty comfortable taking the surveillance approach that I have for as long as I have. There are moments, however, where I do ask myself if I’m taking too great a risk by using that approach. Those thoughts have popped into my head a little more frequently since my hallway consult with the radiation oncologist a few weeks ago.

Maybe the test results in October will give me more clarity and a better sense of direction; maybe they won’t.


In other news, I saw the recent article comparing the effectiveness of the 18F-fluciclovine (Axumin) imaging against that of the  68Ga PSMA imaging. The study used 50 patients with PSAs ranging from 0.2 to 2.0.

The PSMA imaging is proving itself to be more effective at detecting the locations of recurrent cancer but the kicker is that it’s not yet an FDA approved imaging technology.

Still, it’s good to see that progress is being made in the research for those of us who would really like to know that we’re going to be zapping where the cancer is rather than somewhat randomly based on statistics. I’m sure there will be more to come.

Day 3,081 – PSA Discussion with Doctor

IMG_20190418_134348455While waiting for my appointment with the doctor this afternoon, I got caught up on reading about the new Datsun 280ZX in the waiting room in the May 1981 edition of Road & Track magazine. Seriously. That thing belonged in the National Archives, not the doctor’s waiting room. Needless to say, it was a fun trip down memory lane, as I had just graduated from college three months earlier and was driving my 1974 Ford Galaxie 500 (my first car).

The discussion with the doctor went about as expected. In a nutshell: Continue to monitor; no action needed at this point given my PSA level and my PSA doubling time of 155 months. (Calculated using the Memorial Sloan-Kettering PSADT nomogram.)

She told me something new, too, concerning the explanation for some of the very minor fluctuations in PSA levels. I knew that physical activity and having orgasms before a blood draw could impact your PSA level, but she said that even variations in your hydration level can cause minor variations in your PSA readings. Interesting.

Just for grins and giggles, I asked her the $64,000 question: How do you define biochemical recurrence?

There was quite a long pregnant pause before she responded, “That’s a difficult question to answer.” She explained the that it’s been defined many ways and, while she never did answer my question directly, my impression was that she was in the “two or more consecutive increases in your PSA level” camp.

One thing the doctor said, too, was that she has seen cases where patients PSAs start increasing and then plateau and sit there for years without much change at all and no need for intervention.

She also suggested that, given where my PSA level was and how slowly it was moving, that we could retest in six months instead of sticking to the four month schedule that I’ve been using for the last three and a half years. I agreed. I return on 22 October 2019.

Again, the meeting went pretty much as I expected it would, and I’m okay with what we discussed.


I had a great trip to Switzerland in the first half of the month despite some dodgy weather (which is to be expected in northern climates in April). If you’re interested in reading about it (or at least just looking at some photos), you can check it out on my other blog, Travelin’ Dan.

Month 101 – Homeward Bound

This will be a short post, as I’m hammering this out on my tablet somewhere between Zürich, Switzerland and San Diego.

In December, Delta Airlines was having a 24-hour sale on its Delta One service to Europe, and I jumped on the opportunity. I landed a round-trip ticket for 128,000 frequent flyer miles and $93 USD in taxes, fees, and travel insurance. Sweet! The only catch was that I had to travel between February and early May.

When I went into planning this trip, it was a “What if I have to have radiation and this might be the last big trip I can take?” kind of thought running through my head. It was a bucket list trip of sorts. But then my PSA results came back and it became more of a celebratory trip.

I’ll work on my detailed post for my travel blog, Travelin’ Dan, once I recover from the trip and a 9-hour difference in time, and review a few hundred photos and process only the best. In a nutshell, though, I visited Luzern, Interlaken, Bern, and Fiesch. The photo for this post (above) was taken from the Schilthorn and shows (from left to right) the Eiger, Mõnch, and Jungfrau mountains.

For fun, here’s a cell phone photo of the Aletsch Glacier on the south side of the Eiger, Mönch, and Jungfrau, at 23 km / 14 miles, the longest in the Alps. One person told me they had about a meter of fresh snow a week earlier. (It snowed while I was in Luzern.)

And a back-to-reality reminder: I talk to the doctor on the 18th about my most recent PSA results.