This will be a short post this month—my brain has been prostate cancer-ed out after the last few months and needs a respite for a few weeks before I buckle in for the roller coaster ride that is the next PSA test.
Speaking of the next PSA test, I’m planning on going in for the blood draw right around 1-3 August 2016. We’ll have to see how my schedule looks that week.
My urologist has authorized me to get the blood draw as of 1 July, so I could go in tomorrow if I really wanted to, but I’m going to do my best to stick to the first week of August to preserve the even spacing of the last three tests—pretty close to exactly four months apart ( 3 December–6 April; 6 April–3 August).
If I lose my willpower and go early, I’ll let you know.
This week also offered up some major news on the prostate cancer front with a shift towards genetic testing to help determine how to best treat prostate cancer. You can read more about it in this Washington Post article, Leading researchers recommend major change in prostate cancer treatment.
So it’s been 66 months since my radical prostatectomy. How am I doing?
Honestly? Scared. Afraid of the cancer coming back.
Status
Since my 60-month update in January, we learned that my PSA doubled from what it was in December 2015: 0.04 ng/ml to now 0.08 ng/ml in April 2016. That’s still below the recurrence threshold of 0.2 ng/ml, but obviously moving in the wrong direction. In four weeks, I’ll go for another PSA test and we’ll just have to wait and see what happens with it.
Emotions
Yep. There’s been plenty of emotions in the last six months.
When I saw the PSA at 0.08 in early April, it was as though I was knocked off a horse, fell to the ground, and had the wind completely knocked out of me. Dazed, confused, and not even sure that I wanted to try and get up. It took until early June before my emotional response subsided and I got back into a more normal mindset.
Incontinence
I continued with my weight loss program (90 lbs. / 40.8 kg), and that has certainly helped with my incontinence. Very rarely do I have any leakage at this point.
Sexual Function
I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.
I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.
Summary
Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with elevated and apparently increasing PSA readings over the last 10 months, what’s in my future is uncertain. (With the exception of two certainties: 1) An unending series of PSA tests ahead and 2) the thought of cancer ever-present in my mind.)
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.
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.
Sunday, I popped back into the museum where I worked up until January to see my old colleagues and friends. It was good to get caught up and to hear how things were going since I left.
Of course, they inquired as to how I was doing, and that led to a small dilemma for me. Do I tell them about what’s been transpiring, or not?
I lied and told them that things were just fine with me. As I did, it immediately took me back to the days of being back in the closet and having to pretend to be something I’m not all over again. It wasn’t a good feeling at all.
My intent in going there was to let at least one or two of my closer friends there know what was going on, because, as one fellow blogger recently wrote, “A burden shared, is a burden halved.” (And as therapeutic as venting on this blog has been, it’s always better to have a real shoulder to cry on.)
But after spending a little time with my museum friends, I realized that it wasn’t the appropriate time or place to share what I’ve been going through, so I didn’t.
So far, I’ve only told two of my friends (a husband and wife team) face-to-face, and four others via email. That’s it.
Telling my friends in person was more difficult than I expected. The words hung up in my throat and didn’t want to come out. By saying aloud that I had early indicators that the cancer might be returning, made it real.
I could tell the same thing was happening on Sunday with my museum friends as I got closer to uttering those words—they didn’t want to come out. (Hence, another reason not to say anything.)
I’ve yet to tell my sister and her family that all of this is going on; they’re still reeling from my brother-in-law having had his massive stroke in August. They’re emotionally exhausted right now, and I don’t want to add to that burden until I know something more definitive. (And, yes, I know that they have a right to know at some point and, no, the chances of them reading about this here are pretty slim to nonexistent. Trust me.)
The support that I’ve received from you has been incredible, and I’m truly thankful for it. But right now, I need some additional local support on this roller coaster ride. To get that, at some point, I’m going to have to come out of the “cancer may be returning” closet and have that hard conversation with those closest to me.
[Yes, I know I’m getting waaay ahead of myself, but that’s the way this crazy mind of mine works. I like to be prepared. It’s really, really annoying at times.]
Speaking of closets and hard conversations, here’s an interesting 11-minute video on the very topic.
What a difference a good venting session and a couple of days make. I’m back in battery.
Huh?
That’s the old naval gunnery officer in me coming out—the gun’s finished its recoil cycle and is ready to fire again.
Yesterday and today have been much more upbeat and positive, and that’s a good thing. Wallowing in emotions just wasn’t going to hack it.
F*%k cancer. Time to go out and enjoy some San Diego sunshine on this delightful 77° F / 25° C spring day!! (Sorry, the salty sailor in me coming out again.)
My appointment is late Tuesday afternoon, so expect an update later in the evening Tuesday, regardless of the outcome.
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.
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.
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.
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).
Scrolling through my Facebook feed, I came across this interesting article, Gentler attack on cancer may mean that we can live with it longer, about taking a less aggressive approach to treating cancer in order to live longer. The theory is that, if you try to kill every cancer cell with a very aggressive initial treatment, any remaining cancer cells become resistant to further treatment and can be more problematic. If you take a slower initial approach to just contain the existing cancer cells, you may be able to extend your life.
I also came across this article, ASCO Endorses Active Surveillance for Prostate Cancer, recommending active surveillance over immediate treatment for those with low-risk prostate cancer (low-risk being defined as a Gleason of 6 or less). There appear to be some common sense reality checks that allow for exceptions to their recommendation as well. It’s an interesting read.
On my own front, I’ve been doing well emotionally knowing that my next PSA test is coming up soon. My appointment with the urologist is on 19 April 2016, but I’ll probably get the blood drawn when I’m scheduled to be in the clinic for another meeting on 6 April (my weight-loss group—81 lbs./36.7 kg lost!). That means I can probably get my results online around the 9th or 10th and, with luck, they’ll still be in the 0.04–0.05 ng/ml range (or less).
Speaking of luck, my streak of bad luck in 2016 continued. On my way home from my new job on my second week there, I was cut off on the highway by some yahoo not paying attention, and I had to stand on the brakes to avoid hitting him. Sadly, the gal behind me didn’t react quickly enough and rear-ended me to the tune of $2,500 USD in damages. <Sigh> Thankfully, insurance is covering the entire cost, as it wasn’t my fault—my deductible was waived. Of course, the guy who caused the accident drove off into the sunset without stopping.
Biology Ahead!
Wow. I haven’t used that little warning symbol in a long, long time, but there is something to report (I meant to put it in my Life After Prostatectomy–60 Months Later post, but forgot).
One of the potential side effects of a prostatectomy is penile shrinkage. I’d say that I had noticed the change, but interestingly, things seem to have returned to pre-surgery size in the last few months. That’s something to discuss with my urologist in April (not that I’m complaining—just to see if it’s common for that to happen, and if it really takes five years for it to happen).
Dan's Journey through Prostate Cancer 