Day 3,270 – Doctor Visit

Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.

The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.

He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.

One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.

I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”

We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.

On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.

It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?

Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)

The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.

That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.

Prostate cancer is not an “easy cancer.” Far from it.

Day 3,260 – Research Articles on Prostate Cancer

One of the cool things about working in a hospital is that I can access full versions of some of the scholarly articles on prostate cancer that are normally blocked to the public by their publishers. At the end of the day today, I pulled the full versions of each of these articles for a little light bedtime reading about salvage radiation therapy, toxicities, and imaging:

Long-term Outcome of Prostate Cancer Patients Who Exhibit Biochemical Failure Despite Salvage Radiation Therapy After Radical Prostatectomy.

Improved toxicity profile following high-dose postprostatectomy salvage radiation therapy with intensity-modulated radiation therapy.

Long-term outcomes after high-dose postprostatectomy salvage radiation treatment.

Multimodality Imaging of Prostate Cancer.

Salvage radiotherapy after radical prostatectomy: Long-term results of urinary incontinence, toxicity and treatment outcomes

Outcomes of salvage radiotherapy for recurrent prostate cancer after radical prostatectomy.

I skimmed a couple of them on the bus ride home this evening (as much as you can skim on a bouncing bus), and I’ll go through each in a little more detail before my appointment a week from tomorrow.

When I pull articles like this, I consider a few things when reading them:

  • When was the article published? Obviously, more recent is generally better, although you can’t discount data from earlier studies entirely.
  • What type of research was done? Was it a retrospective study of historical medical records or was it a full-blown trial?
  • How many patients were included in the study? Fewer patients (<100) may yield less reliable results than those that include several thousand.
  • Over what time period did the study look at patients? Studies that looked at records from the 1990’s into the early 2000’s will reflect the treatment options and technologies available at that time. Studies done more recently will reflect the impact of newer treatment options and technologies.
  • Who conducted or funded the study? Who’s conducting a study and how it’s paid for could, in theory, perhaps skew the results (e.g., Big Pharma wanting to push a new drug).

So I’ll be going through each article, gleaning whatever I think may be of value for the appointment, adding to my list of questions to be asked.

Please don’t ask me to share the full versions of the articles here or elsewhere. Not only am I cancer-averse, I’m litigation averse. I’m not keen on a copyright infringement lawsuit because I posted something on this blog/website that I didn’t have permission to do. 🙂

That said, I may try to summarize some of the findings in future posts, with full attribution of any quotes, of course.

Off to read a bedtime story or two…

Month 107 – Looking Ahead

A little over a week ago, I hopped online around 10 p.m., checked my latest PSA results, and wrote my last blog post. None of that made for a good bedtime story.

The next day, I was exhausted from not sleeping well after receiving the news—so exhausted that I skipped out from work about an hour and a half early so I could go home and rest. Ever since then, I’ve been fine. I’ve accepted the new number and the fact that, once again, the only thing that I can control is how I react to it. In my heart, I expected the number to go up from the last test, and it did.

I did take a little time to search for some newer articles about salvage radiation therapy but they, like the PSA results, didn’t make for good bedtime reading either, so I put that on hold for now. I’ll be working on my list of questions for the doctor on 22 October, and we’ll go from there.

I’m pretty sure the writing is on the wall that that salvage radiation is in my future. It will take a while to get appointments set up for the radiation oncologist and to do any imaging that we can, and when you throw in the approaching holidays, I just don’t see radiation starting before the end of the year. I could be wrong. (Or, if things do happen quickly, I may just force the start to the beginning of the new year. Who wants to be getting zapped through the holidays? Seriously.)

In the mean time, I’m doing okay. Really. Just one appointment and test result at a time…

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.

Projecting risk for metastasis after radical prostatectomy — THE “NEW” PROSTATE CANCER INFOLINK

I came across this article in one of my feeds. There isn’t an “Ah-ha!” moment in it, but it’s good to see research confirming what many have known with data.

A new paper in Clinical Genitourinary Cancer has provided us with some more detailed information about risk for metastasis in men with recurrent prostate cancer after first-line surgery.

via Projecting risk for metastasis after radical prostatectomy — THE “NEW” PROSTATE CANCER INFOLINK

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 3,175 – Unexpected Consult & Twisted Thinking

Last Thursday, a physician came into our office (keep in mind my office is in a hospital) and was asking about how to bring a volunteer on board to shadow him in radiation oncology. Of course, my ears picked up with the “radiation oncology” part of his request.

After explaining the process to bring his volunteer on board, I asked him if Dr. W was still in radiation oncology. Dr. W was the radiation oncologist that I saw in May 2018 to discuss my rising PSA, and he told me then that he planned on retiring in the next year or so. Dr. W had, in fact, retired according to Dr. B, the physician with the volunteer question.

Dr. B asked how it was that I knew of Dr. W, so I explained that I had the consult with him for getting zapped for recurrent prostate cancer. A bit to my surprise, Dr. B started asking a question or two and, the next thing you know, we’re having a ten minute consultation in the lobby of my office.

In a nutshell:

  • His threshold for starting salvage radiation therapy for recurrent prostate cancer was when the PSA hit 0.10 ng/ml.
  • He talked of how statistically the likelihood of the cancer being in my prostate bed is pretty high. In a tangential way, he implied that having positive margins confirms that the cancer is still in the prostate bed; having negative margins, as I did, makes things slightly less certain.
  • We had a very cursory conversation about imaging technologies, but my sense was that his view of the newer technologies was more optimistic than what I’ve read about their effectiveness at my PSA level.
  • He talked about how deciding to treat is a very personal decision and that there’s no right or wrong answer. But, with a PSA of 0.10, he said that I will be dealing with this again at some point in the future and, if I wait too long, the options for dealing with it become fewer.

At the end of the conversation, he was saying a treatment decision is also based on life expectancy and overall general health. Nothing new here. If I was 85 and had a cardiac condition, he wouldn’t recommend zapping; but if I’m younger and in generally good health, he would treat. “I would get treated if it were me.”

I thanked him profusely for taking the time to have a hallway consult when he was under no obligation to do so. I told him that I have another PSA test coming up at the beginning of October, and that we’ll see what that brings.


Now for the funny part and insights into how twisted my thinking can be at times…

Dr. B’s comment about life expectancy struck a chord with me because it’s something that I often joke about.

My father died at the age of 69 and his mother also died at the age of 69, so I’ve always joked that I’ll follow in their footsteps and die at 69, too. “It’s hereditary,” I’d say. Most would find it pretty morbid and tell me to knock it off.

If you’ve been reading this blog for longer than three minutes, you know I’m a numbers guy (see post title). So on the bus ride home after speaking to Dr. B, curiosity got the better of me. I wondered how freaky it would be if my father and grandmother lived the same number of days in their 69-year lives. When I got home, I ran the numbers.

I plugged their birth and death dates into the duration calculator that I use to calculate the day number of these impromptu posts and found that they didn’t live the exact same number of days, but it was close. Dad outlived Oma by 49 days.

You know I couldn’t just leave it there.

If I live as long as my grandmother, I’ll be checking out of Hotel California on 29 July 2027. If I live as long as dad, it will be 16 September 2027. If I follow Dad’s trend an outlive him by 49 days, it will be 4 November 2027.

And then I had my “Oh, shit!” moment.

I may have less time remaining than the amount of time that I’ve been running this blog—3,029 days (best case) vs. 3,175 days.

I began to wonder what I will do in those eight remaining years. If I have only one big trip a year, what are the eight places I want to go see? How many more times will I see the people important to me if we see each other only once ever 1-3 years? How much longer will I continue to work?

I know it’s cliché as hell, but it was a bit of a wake-up call to get me off my butt and doing more than I am right now. Nothing like having a deadline to motivate you, eh?

I also know that there are no guarantees. I could get hit by a car crossing the street tomorrow, or I could live until I’m 90. I don’t dwell on any of this, but it’s nice to be reminded—albeit in a twisted way—that none of us are getting out of here alive, no matter how hard we try to avoid the inevitable, and that the days we have left should be cherished and embraced, whether in ways big or small.

Oh. If I make it to 5 November 2027, everything from then on is icing on the cake. 🙂

Month 103 – Regaining Focus

Last month I talked about turning a corner in my outlook on my current situation, and boy, I must have fish-tailed around that corner—fast—because cancer has been the furthest thing from my mind pretty much the entire month. Work had a lot to do with that, too.

I’m the volunteer manager for a nonprofit, and we had one weekend last month with five events going on all on the same day at five different locations, and I had to provide 160 volunteers in one day to cover them all. Plus, we had three other events later in the month that needed another 80 volunteers between them. Needless to say, my attention was on getting each of those events fully staffed, and thoughts of cancer fell by the wayside. That’s good.

One unintended side effect from all this is that I really haven’t been keeping up on the advances in the imaging technologies and latest research on treatment of recurrent prostate cancer like I once did. It’s actually been a refreshing break, but I want to get back into researching again so that I have the most current information available when I go for my next PSA test in October.

The cool thing this time around, though, is that I’ll be doing this research from the perspective of educating myself at a leisurely pace rather than one of  being constantly glued to cancer websites in sheer panic because my PSA was rising. That’s turning a corner.


My next post on 4 July 2019 should be a little more substantial. It will be my semi-annual Life After Radical Prostatectomy: 102 Months Later post with more detailed updates about how I’m doing eight and a half years after the surgery.

Month 102 – Turning a Corner?

Normally, there’s a relatively short half-life of feeling good after returning from a vacation. The mountain of work emails and unpaid bills that accumulated while you’re gone just suck the vacation memories and relaxed feelings out of you quite rapidly as you get back into the daily grind.

That’s held pretty true for me after last month’s trip to Switzerland, with two exceptions that, if I can keep the momentum going, make me feel as though I’m turning a corner.

For those of us who have introduced the word “cancer” into our vocabulary, we know that thoughts of cancer are always nearby. Some days we’re better at suppressing them than others. But when the notion of recurrence hits, the thoughts become more prevalent, more intense, and more psychologically draining over time. At least that’s what happened to me.

But since my vacation and since my visit with the urologist last month, I’ve begun to turn a corner in my thinking about my recurrence. In a nutshell, given my numbers (current PSA level and extraordinarily long PSA doubling time), my thoughts are finally shifting from panic to calm concern.

In some of the more recent literature about prostate cancer, you hear more and more people talking about treating some cases of prostate cancer as more of a chronic illness instead of an aggressive disease. For now, I’m happy to—rightly or wrongly—lump myself into the “manage it as a chronic illness” category. It certainly has helped relieve some of the stressful thoughts about recurrence and the potential side effects of salvage radiation therapy or hormone therapy. Of course, if my PSA shoots up again in October, that may change my approach to all of this yet again.

This approach certainly isn’t for everyone. I feel blessed to have a PSA doubling time of 155 months, but even so, I still recognize there’s an element of Russian roulette in my decision to continue to monitor for now. I’m okay with that.

The second exception to my vacation not wearing off within a week has been with my photography.

Spending ten days wandering around Switzerland with my camera (the first time I’ve flown with most of my gear) reinvigorated my interest in getting out and photographing even more, and that’s been therapeutic for me as well. When I’m looking through the lens and—excuse the pun—focusing on what’s in front of me, I’m not thinking about cancer. At. all.

I’ve been out with my camera every weekend and even a few week nights since coming back, and I hope I can keep the momentum going through the summer. I feel better, plus practice makes perfect. (Although there’s no such thing as a “perfect” photograph.)

In the end, I’m glad that I pushed myself to go on the trip. Perhaps the half-life of this vacation will be as long as my PSA doubling time (or longer).

—Dan

P.S. Sorry for the tardiness of this post. I was out playing. 🙂