Tag: PSA Anxiety

Six Years

On By DanIn Prostate Cancer2 Comments

Six years ago today, I was told I had prostate cancer. Guess what? It’s six years later and I’m still alive and kickin’. Woo-hoo!

PSA Trend 20160803Of course, the cancer storm clouds may be brewing as I head into my next PSA test in a few weeks. Who knows what crazy result it will yield. Remember, in the last 15 months, we’ve gone from undetectable to 0.05 to 0.04 to 0.08 to 0.05. Any bets on the results this time around??

My schedule in early December is quite hectic, so I’ll likely go for the blood draw during the week of 28 November. As usual, I’ll wait three days to get the results online, and then my appointment with the urologist is on 29 December.

Stay tuned. In the meantime, here’s wishing everyone a Happy Thanksgiving with family and friends!

Month 69 – On Reflection

On By DanIn Emotional Aspects, Prostate Cancer, RecurrenceLeave a comment

It’s been a week since my last PSA results came in—it seems like eons ago—and I really have been able to just ignore them for pretty much the entire time. That’s good.

With the yo-yo movement in my PSA over the last 4 tests, I can’t conclude much of anything aside from the fact that there will be more PSA testing in my future.

PSA Trend 20160803

The engineer in me reflected on the last year of testing looking for some logical explanation.

I do remember that a year ago, just before the September test, I made the mistake of having an orgasm within 24 hours of the test. I thought that may have explained in the increase from undetectable to 0.05 ng/ml. But then the doctor threw in the possibility of the new ultra sensitive PSA test skewing the results. Two variables that weren’t present for the previous undetectable test.

For the December and April tests, I eliminated one variable by abstaining from orgasms for a nearly a week before the blood draw. The doctor asked me to abstain for two weeks for the August test, and I did.

If the next PSA test 3–4 months from now stays in the 0.05–0.08 range, I’ll be more inclined to think that this is a result in the change to the ultra sensitive test and nothing more. (Part of me wants to go to another lab for an independent test and see what it produces, but that will just introduce one more variable when we’re trying to eliminate them.)

At 0.05–0.08 ng/ml, I’m still well below the widely accepted biochemical recurrence threshold of 0.2 ng/ml. That generally makes me breathe a sigh of relief, and I think that I can come to terms with living with those numbers if that’s all it is.

But a UCLA study published in May 2015 showed that, under certain conditions, the ultra sensitive PSA threshold of 0.03 ng/ml was a good predictor of recurrence.  Yes, it was a small (247 patients) retrospective study, but that little fact has stuck in the back of my mind and gives me concern. (I wrote in more detail about it in my Day 1,768 post.)

There was also a Johns Hopkins study published in February 2016 that also indicated that low PSA levels measured by an ultra-sensitive PSA test were predictors of recurrence.

So I’m going to just wait until the doctor appointment on 23 August and see what she has to say about all this. It will be interesting—maybe even entertaining.

Day 2,093 – The Results

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence13 Comments

PSA Trend 20160803The results are in: 0.05 ng/ml.

I simultaneously breathed a humongous sigh of relief and got pissed off. “Will you make up your freakin’ mind already!?!?” Yes, I’m elated that my PSA actually came down from 0.08 to 0.05, but I’m pissed that this raises more questions than it will answer, and that I’m going to have to keep riding this wild roller coaster for the foreseeable future.

This round was particularly tough, emotionally. I usually never get worked up in advance of the blood draw but, before heading off to the clinic Monday morning, I was so nervous that I ate one spoonful of yogurt and decided that, if I continued, I’d be seeing that yogurt again going in the opposite direction.

When I finally saw that the results had been uploaded to my provider’s website tonight, my hand on the mouse was shaking and I truly didn’t want to click on the link to get the news. Not good. (By the way, I learned that my provider only uploads the data once a day, around midnight Eastern Time. That sucks.)

It will be interesting to see what the urologist has to say on 23 August. I’m sure part of it will be, “Let’s retest in December.” Yippee. I’m still quite concerned that I have a detectable PSA (albeit a low value) where I didn’t have before. What’s up with that?

Well, I’m spent. It’s time to call it a night. Thanks to everyone for your kind words, thoughts, and prayers.

Day 2,091 – Off for the Blood Draw

On By DanIn Prostate Cancer, Recurrence8 Comments

So I’m off to get my blood drawn for the next PSA test. (Those 4 months went by faster than I expected.)

Anyone want to get a pool going on what the results will be? (Hey, you got to have some fun with this crap, right??) My money is on somewhere between 0.95 ng/ml and 0.12 ng/ml. It was 0.08 ng/ml in April. Of course, if it doubles like it did from December to April, that would put it at a scary 0.16 ng/ml.

My real desire is for it to be 0.08 or less, but in my mind, I’ve been preparing for it to be in that 0.95–0.12 range. Expect the worst; hope for the best; deal with the facts once they’re known.

I’ll keep you posted as I log into my health account every hour on the hour for the next three days searching for the result. The appointment with the urologist to go over the results and potential next steps is on 23 August.

Month 67 – Back to “Normal”

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence1 Comment

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.

Day 1,982 – Exhausted

On By DanIn Emotional Aspects, Recurrence6 Comments

Cancer is exhausting.

Ever since getting my PSA results last Friday, I’ve been so emotionally charged that I just reached a point of pure physical exhaustion tonight. But, on a positive note, today was the first day since last Friday where I wasn’t overcome with complete dread, anger, and sadness.

The whole week I’ve been mad at the world for having to even be thinking about the cancer coming back. I cruised along for more than four years thinking, “I got this licked,” with each successive undetectable PSA test, especially as I closed in on the five year mark. And now this. Pissed me off.

Being so angry didn’t bode well for anyone around me, as the smallest little thing would set me off. Being in a job that is almost entirely about relationships with people, it was extraordinarily difficult—and draining—to not allow that anger to come through and get directed at the people I support.

Of course, there was no way to just purge cancer from my thoughts; it was ever-present, especially because I’ve been doing research in advance of my appointment with the urologist on Tuesday. That made it challenging to focus on the tasks at hand at work, too.

Then the sadness of just having to go through this all over again, knowing that this time it will be a more difficult journey than just a snip-snip, your prostate’s gone, sapped any remaining positive energy from me as well.

Lastly, there’s the frustration of not having any immediate, definitive answers as to what in the hell is going on. Yes, I know that I’m getting ahead of myself, but I’m also not naive. Having three consecutive elevated PSA readings tells me something different is going on. In my mind, I’m trying to reconcile the fact that this really is happening, and that I need to be prepared to accept the fact that the cancer may be back one day.

My prediction is that Tuesday with the urologist will go something like this:

  • Yes, this is an interesting development having a third elevated PSA test higher than the others.
  • It warrants concern, but not panic. (Too late.)
  • We’ll want to do another PSA test in 2-4 months.

Perhaps the best analogy for this week is that I had been driving down the highway on cruise control, bumping my speed up a tad with each successive undetectable PSA test, then—BAM!—out of the blue, I have a blowout. It takes a few moments to assess what happened, reconcile what needs to be done, and then regain control of the situation. After the adrenaline rush subsides, you’re zapped of all your energy.

Right now, I’m somewhere between reconciling and regaining control. I’ll get there.

Month 65 – PSA Debate

On By DanIn Prostate Cancer, Recurrence5 Comments

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 1,977 – PSA Results

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence9 Comments

Crap!!! (I used another four-letter word, but I would like to maintain a sense of decorum about this blog).

That little cancer cloud hanging over my head let loose a giant thunderbolt this week.

My PSA came back at 0.08 ng/ml, double what it was in December (0.04 ng/ml) and more than it was in September (0.05 ng/ml).

Did I say, “Crap!!!” ???

Even though it’s still below of the widely accepted 0.2 ng/ml definition of biochemical recurrence, I better start researching salvage treatments for recurrence because doubling in four months is not a desirable PSA velocity, at least in my pea-sized brain.

Did I say, “Crap!!!” ???

My appointment with the urologist is on 19 April, so I’ll have time to get prepared with tons of questions.

Crap!!!

PSA Trend

 

Day 1,852 – PSA Results

On By DanIn Prostate Cancer, Recurrence1 Comment

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 1,844 – Unfazed & Unshaven

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence2 Comments

I’ve been surprised by how unfazed I’ve been over my upcoming PSA test next week, the one that will confirm whether or not my post-surgery PSA is actually rising.

I’ve not let it get the better of me in my day-to-day life, which has been remarkably pleasant. That doesn’t mean that I’m not concerned about the results, though. We’ll cross that bridge when we get to it. No sense in spending a ton of energy worrying about the unknown.

I plan on having my blood drawn on Wednesday, but a potential hiccup at the clinic may alter that. The clinic is actually relocating down the block to a larger facility, and the move is supposed to be completed by Monday. With the luck, there won’t be any delay and the lab will be up and running to allow me to take the test as scheduled.

When this rising PSA fiasco began in September, I had the blood drawn on a Wednesday and saw my results online on Saturday. I’m assuming a similar timeline for this go around. I’ll keep you posted.

Oh. Come Tuesday, I’ll be delighted to lose my Movember beard and mustache. Good to highlight awareness, but they’re driving me nuts and it’s time for them to go. (Besides, given its almost pure white color, I don’t want to be confused with a jolly ol’ elf that will be making his rounds in four weeks!)