Emotionally, doing quite well, although I still have the occasional fit of being pissed at this whole situation. Otherwise, pretty much back to my normal day-in, day-out routine.
I’ve also been doing a bit of reading on the concept of recurrence and treatments. Not obsessively, and not letting it add fuel to any emotional fire. Absorbing it in small doses with an open mind. If anyone has any compelling article, book, or other source on the topic, please feel free to share.
I received confirmation today that the next step in the process—the bone scan—is scheduled for 19 May 2016. I’m fine with that.
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).
So 2016 is off to a stormy start for me (more on that in a minute) which means that I really haven’t focused on prostate cancer all that much this month. However, there was one article that caught my interest and one that I want to read more about.
The BMJ (formerly the British Medical Journal) published an article on 6 January 2016 titled: Why cancer screening has never been shown to “save lives”—and what we can do about it. Obviously, for those of us walking down this path, that title grabs our attention.
Because the BMJ requires registration to read the full article, here are links to a summary, the BMJ site, and an Infographic that you may want to check out. I’ll go back and read it in more detail when the dust settles after my stormy start to 2016.
Digging for roots
My rotten start to 2016 actually began late in 2015 when roots took over the sewer line coming out of my guest bathroom in my house and shut down anything flowing out of the house on New Year’s Eve. The plumbers returned on Saturday, 2 January to clear the line again, and on Monday, 4 January, they were breaking through the concrete slab in my house to get to the offending roots.
Two days and $4,200 USD later, the roots were gone, the hole was back-filled, and it all was concreted over. Of course, now I have to replace the tile, vanity, and sink, so I decided it was time for a refresh of the entire bathroom (another $6K–$8K, potentially).
You may recall that I flew to Chicago in the middle of all of this chaos to visit my sister and brother-in-law and their family. I returned to work on Thursday, 14 January and around 2 p.m. on Friday, I get a call from the Human Resources manager, “Could you please come up to my office?”
I entered the office and there was the HR manager, my boss, and her boss. “This doesn’t bode well,” I thought to myself. Sure enough, my position at the museum was eliminated in a cost-savings move, effective immediately. Bummer. But, hey, at least I’ll have time to focus on the bathroom remodel now, right?
Not so fast…
On Saturday, 30 January, I thought I better get a job search in gear, so that evening, I came across a position which was exactly what I was doing before—volunteer coordinator—at for an organization less than half a mile from my old employer. I sent my resume off on Sunday; got an email on Monday requesting an interview; had the interview on Wednesday; and was offered the job on Friday. I accepted and started the job this week. Oh. and it pays more, which will help with all the repairs.
See, there is a silver lining in every storm cloud!
I started mine with a trip back to my hometown outside of Chicago to my sister and her family. (I know. Who in their right mind flies from San Diego to Chicago in January?!?) It was a trip that was overdue.
In August, my then 54-year old brother-in-law had a massive stroke, completely out of the blue, that left him with no movement in his left arm or leg. My sister and I discussed the timing of me returning to support her, and she wanted to hold me in reserve for when the local support from friends and family there would begin to wane. Between a whole host of considerations, it just worked out best for me to return now.
Between my brother-in-law’s stroke and my own scare with the upward tick in my PSA four weeks later—and the fallout from both—it does make one reflect once again on priorities and the truly important things.
That point was driven home when I stumbled across this post on my Facebook timeline: The Tail Endby Tim Urban. It’s a quirky read with an interesting twist on how to look at our time remaining in this world.
My 58th birthday was a few days ago, and with this stupid cancer thingy and a family history of cardiac issues (Dad and his mom both died at age 69 from cardiac issues), I’m afraid that I have more days behind me than in front of me. It’s time to get busy prioritizing my own list, and then act on it.
Oh. My brother-in-law? He’s made tremendous strides in his rehabilitation with movement returning in his leg faster than it has in his arm (but there’s progress in both). We’ll just have to be patient and see how far the rehab will take him.
Moonrise over Algodones Dunes near Brawley, California
So it’s been 60 months since my radical prostatectomy. How am I doing?
That’s a little more challenging to answer with this update, as there’s been some change since my last six month update.
Status
For four years, my PSA had remained undetectable, but in September, not long after my 54-month update, my PSA moved from undetectable (<0.03 ng/ml) to 0.05 ng/ml. Not a huge number and not close to the biochemical recurrence definition of 0.2 ng/ml, but concerning enough to both me and my urologist that we did a follow-up PSA test in December. Those results came in at 0.04 ng/ml. The urologist said there was no need to panic, but was also concerned enough to put me back onto a four month testing cycle again. This could likely go on for years.
Emotions
That unexpected movement in my PSA sent me on an emotional ride rivaling any looping theme park roller coaster, at least initially. As we get into the test, wait, test again, wait some more mode, I have to be wary of letting myself get trapped in a state of suspended animation. Between the initial test results in September and the follow-up test in December, I placed my life on hold for those three months. I can’t do that. I have to live between each test going forward, knowing that perhaps someday the reality will be that the cancer is back.
Incontinence
I continued with my weight loss program (75 lbs. / 34 kg), and that has certainly helped with my incontinence. But then I caught a cold in October that just wouldn’t relent, and during most of that time, I found myself back in pads as insurance when I coughed, sneezed, or blew my nose hard.
Since then, I’ve noticed there have been a few days where I may be more tired, and I may be prone to some very slow seepage that has been a little disconcerting.
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.
Support Group
You would have thought that I might have sought out help in the form of a support group earlier than five years into this journey, but I didn’t until now. I joined the Gay Men’s Prostate Cancer Support Group here, mainly to see if anyone had any insights into the social aspects of trying to date after a prostatectomy. I’ve only been to two meetings so far and it has been beneficial to hear what others continue to go through. I’ll keep at it for a while longer and be there to share my own experience with a couple of the newly diagnosed members.
Summary
Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with an increased PSA over two readings three months apart, I have to admit that I am a bit more concerned about the notion of recurrence.
Dan's Journey through Prostate Cancer 