Month 67 – Back to “Normal”

What a two months it’s been.

I’m finally back into a more normal routine after getting knocked off my horse with my PSA increasing to 0.08 ng/ml in April. The raw emotions have subsided and have been replaced with a constant, low-grade concern as I wait for my next PSA test.

One ironic thing that won’t let me completely purge the notion of cancer from my mind is the fact that my office is in a hospital and, every morning on the way to my office, I walk down a long corridor that leads directly to the “Radiation/Oncology” suite. And every day, I’m reminded that radiation may be in my future.

The urologist set my next appointment for 23 August, but she put the blood draw order into the system for any time after 1 July. I won’t go that early.

The engineer in me wants to make sure that the PSA tests are evenly spaced for easier analysis (geek, I know). The last two tests were almost exactly 4 months apart (3 December 2015 & 6 April 2016), so I plan on going in for the blood draw on or about 3 August to keep things consistent. It might make calculating PSA doubling times easier.


Just as I was putting the finishing touches on this post, I came across this article: Is standardization of the PSA cut point for biochemical recurrence after surgery a good idea?

Yet another study offering conflicting and confusing guidance. <sigh>


When you introduce cancer into your vocabulary, it’s impossible not to think about the end of life at the same time. Sure, none of us want to jump the gun and rush things, but it’s a natural extension of the word cancer.

My father died peacefully in his sleep 19 years ago next week. My mother, on the other hand, went through a grueling end ten years ago as mesothelioma and emphysema took away her ability to breathe.

When it comes our time to go, most of us would opt to die as my father did—quietly and quickly. Sure, it was hell on those of us who remained behind because no one ever expected it to happen; he was just 69 years old. For him, however, there was no extended suffering or pain.

The California End of Life Option Act went into effect this week, and I’m thankful that I now live in a state where I can have a say in how my life ends if this cancer thing ultimately gets the better of me.

Yes, I’m getting waaaaaay ahead of myself. The only question is whether more courage is required to make that end-of-life decision or to suffer through cancer running its natural course.

Mom wasn’t afraid of dying, but her biggest fear was that of suffering at the end. Her fears came true. I know she would have jumped at the chance to make her own determination on how to avoid that suffering if the option was available to her.

Again, I hope that I don’t have to worry about this for a very, very long time. I’ll settle on worrying about the next PSA test results for now.

Month 65 – PSA Debate

Well, with the jump in my PSA to 0.08 ng/ml that I reported a few days ago, I’ve been poring over some literature on the debate between the standard PSA test that’s been used for years and the newer ultrasensitve PSA test (which I’ll abbreviate uPSA) that my provider switched to in March 2015. Let’s review:

  • In January 2015 I had my last undetectable reading (<0.03 ng/ml) using the standard PSA assay.
  • My provider switched to the uPSA assay in March 2015.
  • My September 2015 uPSA reading came back at 0.05 ng/ml, sending me into full panic mode. Given the accuracy of the standard PSA test of +/- 0.03 ng/ml, it, too, should have been able to pick up the 0.05 ng/ml reading in September if it had been used.
  • We retested in December 2015 and my uPSA was 0.04 ng/ml. I would attribute the change from 0.05 to 0.04 to the daily variations that so many talk about and consider that to be insignificant. Still, the standard PSA test could have picked up the 0.04 reading had it been used.
  • And now in April 2016, my uPSA was 0.08 ng/ml.

Those against using the uPSA argue that we’re simply measuring noise and that anything under 0.1 ng/ml should not be used as a decision point to start salvage therapy. They also call into question the accuracy of PSA doubling times using the uPSA test given that it may be measuring more noise than actual changes.

Those embracing the new uPSA test argue that initial, small-scale studies show that uPSA can be a predictor of recurrence with readings as low as 0.03 ng/ml, and that it allows for earlier intervention with salvage therapy. More large-scale research is needed to confirm these early findings.

Some of the literature written against the use of uPSA goes back to 2000. Technology advances in sixteen years, and that would be my question to those opposed to the uPSA. At one point in time, I’m sure that doctors and scientists scoffed at the standard PSA test as being a newfangled, meaningless test that wouldn’t provide doctors or patients with actionable information, but it became widely accepted.

All I know and care about as a layperson is that there is upward movement on my PSA when there had been no movement for four years. Even if it’s just noise, 0.08 is getting awfully close to 0.1 and is halfway to 0.2—and it took just seven months for this to happen. That scares the crap out of me.

And, if I am destined to go down this path of recurrence, don’t even get me started on the whole conflicting and confusing guidance on salvage radiation and hormone therapy! I’ll save those discussions for future posts.

When you’re dealing with cancer, you really don’t want to wish for days to pass quickly, except when you’re waiting for test results and doctor appointments. April 19th can’t come quickly enough right now.

Day 1,974 – PSA Blood Draw

It’s funny how time, distance, and distractions can take your mind off things. I’ve been so busy in my new job and personal life lately, that I haven’t had any time for another case of PSAnxiety leading up to this morning’s blood draw. The remainder of the week and weekend will be equally busy (and distracting), which is a good thing.

The other thing that’s different is my indifference. I guess I finally came to the conclusion that there’s absolutely no rational reason to get all worked up about something that I can’t control. What will be, will be, and there’s no sense wasting all that energy driving myself nuts with worry. Wait for the results, then go from there.

Experience is a good teacher after all. I’ll post the results when I have them (or in my regularly scheduled monthly post on the 11th).

Day 1,861 – Meeting with Urologist

I met with my urologist this afternoon to review my now detectable PSA readings.

She was happy that the reading stayed essentially the same, and said that there’s no need for panic. However, she’s concerned enough that we’ll retest in four months and will probably continue to do that for the foreseeable future, just as I anticipated. This test-and-wait routine can go on for years.

One of the things that I need to work on is not putting my life on hold until the next test result. I found myself doing that between September and December, and that’s not a good thing. Time to just say to hell with this stupid cancer and move forward. If it comes back, it comes back and I’ll deal with it then.

Day 1,852 – PSA Results

The results are in. My current PSA is 0.04 ng/ml. In September it was 0.05 ng/ml and prior to that it had been undetectable for four years.

So what does this all mean? Hell if I know. I’ll learn more from my urologist on 15 December. In the interim, here’s my take on it.

The PSA level is still well below the biochemical recurrence level of 0.2 ng/ml, so no need to panic.

I’m glad to see that it didn’t increase beyond 0.05 ng/ml. That means it’s consistent for now (why quibble over one one-hundredth of a nanogram) and perhaps the change in lab methodology to the ultra-sensitive PSA test is, in fact, what’s driving the elevated readings.

On the other hand, that may not make sense. The less sensitive PSA test (accurate to 0.03 ng/ml) would have been able to detect the 0.05 or 0.04 readings if my PSA was elevated prior to the conversion to the uPSA test. That tells me that my PSA has risen slightly in the last year.

I have to admit that I hoped for better news but am glad it’s not worse news. As I predicted a while back, I suspect we’ll continue to monitor my PSA on a more frequent basis (quarterly?) going forward for years to come.

I’ll share the urologist’s thoughts after the appointment on the 15th. Thanks for your kind thoughts and support along the way.

Day 1,849 – Pricked

I arrived at the clinic right at the scheduled opening time, and nine people were already checked in ahead of me. After waiting 1 hour and 25 minutes, my arm was pricked and the blood was drawn for my PSA test.

Now the waiting begins. With the impending weekend, I’m not sure that I’ll have my results before Monday.

Day 1,848 – Blood Draw

Went to get my blood drawn at noon only to learn that the clinic lost the contract for two of its three lab technicians, so they cut back the lab’s hours to end at 11:30 a.m. No blood drawn today.

Needless to say, I’m pissed.

Now I either take off work tomorrow to get the blood drawn, or I wait a week until my next day off. Guess I’ll be late for work because, psychologically, I was geared up for everything to happen this week. Not sure I’m up for waiting another week to ten days.

More to follow.

Day 1,781 – Grappling with PSA Anxiety

Wow. This is going to be tougher than I thought.

Ever since that stupid PSA test crept upward from undetectable to detectable at 0.05 ng/ml, I can’t seem to get that fact out of my brain. Even when I can focus on something other than that, it’s still ever-present, lurking in the background ready to consume my thoughts at the first distraction.

Interestingly, I’m not sure it’s the possibility of the cancer returning that I fear, or even the side effects of potential salvage treatments (although some of those can be quite scary). It’s too early to think in those terms. My immediate concern is more about having to play this freakin’ waiting game and the possibility that I’ll be playing this waiting game every three to six months for years to come.

Yes, I’ve already suffered through PSA anxiety after the surgery, so you think I’d be used to it by now. But in a post-surgery world, each time the result came back undetectable, my confidence that I was one step farther away from cancer grew. Now the situation is reversed. With each test, it’s no longer an affirmation of the good news that I already knew (undetectable); now it’s a reason to worry about the unknown. “Did the PSA move upward? If so, how much and how quickly? How many ng/ml am I closer to recurrence?”

I know that each day is a gift and that we’re to live in the moment. Now, though, I feel as if I’m in a state of suspended animation, waiting for 2 December to roll around for the next needle prick. That can’t be. I need to be living for today in case tomorrow I cross the 0.2 ng/ml threshold.

Early in this adventure, I said that we can’t always control what happens to us, but we can control how we react to it. It’s time I followed my own advice–gain control over this PSA anxiety monster.

Wish me luck.

Stupid cancer.

Day 1,769 – Getting Prepared

It’s the day before my meeting with my urologist, and I’ve been scribbling down the questions that I’m going to ask tomorrow. The Boy Scout in me  is coming out: Be Prepared.

Emotionally, it’s been one of my better days in the last few days. Yesterday, I was mad as hell in the morning and sad by sunset.

One of the infuriating things about this whole adventure is that there’s just sooo much information that’s out there, and there are so many different approaches to the same issue, that it makes it extraordinarily difficult to sift through it all and make sense of what I should do next. Then, of course, there’s the inherent bias introduced by perspective. Talk to a urologist, get one opinion; talk to an oncologist, get another; talk to a surgeon, get a third. While they all care about their patients, let’s face the fact that they are running a business and that can influence recommendations.

A case in point is the fact that a few days ago, I read something that made me think I would be a good candidate for salvage radiation therapy based on my Gleason score and time to PSA increasing. The next day, I read that, because I had negative margins, SRT wouldn’t really be an option, as the cancer would be outside the prostatic bed. Maybe I was just too drained and misread one or the other, but it sure can be confusing.

With luck, I’ll have some answers by lunchtime tomorrow.  Look for an update in the afternoon where hopefully I’ve been proven to be an overreacting drama queen.

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Day 1,767 – A Few Rough Days

Wow. I’m back to the reason I started this blog: If I don’t write, my head will explode. Really.

After my initial meltdown over discovering the change in my PSA reading a week ago today (last Saturday), I was cruising through the last week pretty well.  Sure, it was on my mind, but only peripherally.

Thursday night, however, the thought of an increasing PSA came barreling into the forefront of my consciousness like a runaway freight train careening down a mountainside.  And it stayed there.  All. Freakin’. Night. It remained there all day Friday, too, and well into the wee hours of this morning when my body finally pulled the plug on my brain and said, “Enough! Sleep!!”

I had a flashback to the early days of this experience where I was so overcome by thoughts that I actually went to the doctor, exhausted, asking for assistance in trying to get some sleep.  I thought, “No! Not again! I don’t want to go through this again!”

No matter how hard I tried to re-focus on anything other than increasing PSAs yesterday, I kept coming back to it over and over again. Technically, I never came back to it, because I never actually left the thoughts behind. They were a constant presence.

Nothing worked, so I figured I’d tackle it head-on by breaking out Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer and researching more so that I would be better prepared for my urologist appointment on Tuesday. I’m glad that I did; I’m a little smarter this morning than I was last night.

I know that I’m getting way, way, way ahead of the facts here, but I learned that I’d be a good candidate for salvage radiation therapy (SRT) given my Gleason of 7 and being more than three years out since the increase in PSA began.  The only unknown is the PSA doubling time.  Of course, just like everything with prostate cancer, there are multiple schools of thought as to whether and when SRT should start.

But I also learned that it can take up to 8 years on average after the first sign of a PSA increase for the cancer to metastasize to the point where it can show up on a scan someplace.

At this point, the logical, analytical side of me understands that having a PSA of 0.05 ng/mL is still considered to be undetectable, and there’s no reason to panic. I’m generally okay with the number. What I’m not okay with is the movement in the numbers.

I get that most doctors believe that biochemical recurrence doesn’t occur until the PSA hits 0.2 ng/mL, with others believing that it’s better to wait until it’s 0.4 ng/mL, so 0.05 ng/mL isn’t close to either of those numbers.

I also get that emotions are fickle and often trump logic in a big way, and that’s what made me the most frustrated this week–my inability to control my emotional reaction as I would like to.  I really, really don’t want to be going back to Days 19 -22 again. Really.  But that uncontrollable emotional roller coaster is all part of the wonderful experience we call cancer.  [Sarcasm.] I hate roller coasters.

Tuesday’s urologist appointment can’t come quickly enough. Things that I’ll be asking:

  • What does going from a reading of <0.03 ng/mL for over 4 years to a reading of 0.05 ng/mL at 4 years and 8 months mean to you?
  • How and when are we going to confirm that this was either a blip or a real change?
  • If it is a real change, what’s the plan going forward?

Standby for a few random posts in the days and weeks ahead as we navigate through this new chapter in my journey.

[Oh. I had to break out my spreadsheets to calculate what day of this journey today is.]

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