Day 1,988 – The Day After

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence9 Comments

It’s the day after my appointment with the urologist, and I’ve come to learn how truly amazing is our capacity to experience the full spectrum of emotions simultaneously. Specifically, I felt a strong sense of being at peace today while still being mad at the world.

I know the doctor never explicitly stated that the cancer is coming back, but her concern and her actions tell me that I’ve taken my first steps down that path. Sure, it may take six months, a year, or even longer of traveling to that magical 0.2 ng/ml biochemical recurrence destination, but in my mind, once you start down that path, there’s little you can do to get off it.

Salvage radiation or androgen deprivation therapies may slow the rate at which I progress down the path, but, in my mind, the ultimate destination will be the same. The question is whether it will allow me enough time to die with prostate cancer and not from prostate cancer.

Am I getting ahead of myself? I don’t think so. Something in my gut tells me that this is really happening. And, no, that’s not giving up—it’s just accepting reality. Having a healthy outlook on death and dying came from my mom who, coincidentally, died—or, to use her word, “croaked”—ten years ago tomorrow. (She left my sister and I a note with instructions that started, “When I croak…”)

The sense of peace that I’m feeling comes from having much of the ambiguity removed. Sure, there are plenty of tests ahead that will either confirm that I’m on the path or add doubt as to whether and how fast I’m progressing down the path. And there’s plenty that even the experts can’t agree on concerning the therapies, and that will be maddening. But now I feel as though I have a sense of purpose—something to focus on—and that’s where the peace comes from.

Do I want to be on this path? Hell no. I’m mad as hell that I’m in this situation. But the anger will subside, and then I’ll focus on two things: 1) Living and 2) figuring out the best course of action to slow or stop the progress of this monster.

And if 4, 8, or 12 months from now, I’m proven to be a complete idiot because there was no recurrence, then I’ll take that, too. It certainly won’t be the first time nor will it be the last.

Now, if you’ll excuse me, I have four months of getting really, really smart about salvage therapies, their effectiveness, their risks, and their side effects.

Day 1,987 – Urologist Meeting

On By DanIn Prostate Cancer2 Comments

I’m sitting in the waiting area waiting for my appointment with the doctor as I write this.

This morning, I was a real grump and didn’t suffer foolish things with any grace. And there were more than the average number of foolish things happening today.

As I walked out to the car, the closer I got to it, the less I wanted to get in it. Perhaps I viewed it as the beginning of the drive to the gallows.  (Yes, the mind goes to strange destinations under these circumstances.)

I’ve definitely come to terms with the notion that more tests will be in my future. And I thought I had come to terms with the notion that the cancer is coming back. But perhaps not. Until the doctor actually utters those words, “the cancer is coming back/back,” there’s always a glimmer of hope.

So once again, I wait.

On leaving the doctor’s office, I came to the conclusion that prostate cancer is the medical equivalent of Chinese water torture.

Just as I predicted, another PSA test in four months.

The doctor was concerned about the increase in my PSA, but reminded me that it’s still a low number. She also agreed that the change in test methodology had little to do with the increase. One variable eliminated.

She did another DRE just to be safe and didn’t feel anything that gave her concern.

We did talk about treatment options given where we think this is heading. Her immediate response was hormone therapy would be her first treatment choice, and she wasn’t at all keen on radiation because of its long-term side effect potential. That doesn’t mean she’d rule out radiation if it was something that I was really interested in pursuing.

We talked at some length about the conflicting literature on both radiation and hormone therapy, and she, too, agreed it can be confusing and maddening, even for urologists.

We talked about the timing of any potential treatment and her response was, “I don’t know,” mainly because we don’t have enough information to make a decision yet. The good thing was that she felt comfortable letting things go for another four months, and so do I. We need to better understand what’s happening before embarking on any treatment.  She said some patients demand action after the first signs of a PSA increase. That’s not me.

The one last thing that we talked about and agreed on was the value of a baseline bone scan, so she put in an order to have one done. I just have to wait for the call to schedule it.

She never explicitly said, “the cancer is coming back,” but we’re sure behaving as though it is.

So bottom line, we establish a baseline bone scan, wait four months, and let the next PSA determine our next steps. She said to be concerned, but not to panic. Too late.

Drip……..

Drip……..

Drip……..

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Day 1,984 – Back in Battery

On By DanIn Emotional Aspects, Prostate Cancer4 Comments

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.

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 1,974 – PSA Blood Draw

On By DanIn Prostate CancerLeave a comment

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).

Life expectancy, mortality, surgery, risk, and management of localized prostate cancer

On By DanIn Prostate Cancer, Research1 Comment

Found this to be an interesting article:

Life expectancy, mortality, surgery, risk, and management of localized prostate cancer – http://wp.me/pdkiw-5ZS

Battling Insurance / Overcoming Fear

On By DanIn Prostate Cancer3 Comments

One of my blog readers shared a story via email that had two elements to it. I was hard-pressed to provide insights, so I thought I’d ask for your perspectives as well.

First, he had had radiation to treat his prostate cancer but it apparently caused significant issues with his sexual performance to the point that he’s considering a surgical solution to try and restore it. The health insurance company, however, won’t pay for it.

To try and get the insurance company to pay for it, he needs to talk with his human resources representative at work about the terms of the contract, but he “would rather die” than speak to the HR rep about sexual function issues.

So my questions to you are:

1. What advice would you give concerning battling the insurance company?

2. Did you have a similar fear of discussing sexual function/ED with your support team and, if so, how did you overcome it?

Please leave your respectful, constructive comments below if you can help.

Month 64 – Rethinking How Aggressively to Treat Cancer

On By DanIn Emotional Aspects, Research, Sexual Function, TreatmentLeave a comment

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.

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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).