Tag: Prostate Cancer

Day 2,113 – A Visit with the Urologist

On By DanIn Prostate Cancer, Recurrence4 Comments

Well that went just as I expected it would:

  • No explanation as to why my PSA is where it’s at and why it’s doing what it’s doing (yo-yo readings).
  • No willingness to state with any certainty whether I’ll experience biochemical recurrence (BCR) at some point in the future.
  • No meaningful discussion of next steps until we know what we’re dealing with.
  • Retest PSA in December.

So we go back into the wait, retest, and wait some more mode for the foreseeable future. I guess that’s okay, but I’m a pretty binary guy, so it really would be nice to know that, yes, the cancer is coming back or, no, it’s not. At least then you can work to come to terms with the answer even if it’s the one no one wants to hear.

We did talk some about using other imaging mechanisms to see if they can pick up on any micro-metastases if the December results are worse than where we’re at now. We also talked a little about salvage radiation therapy, hormone therapy, and the timing of each but, again, nothing that I didn’t already know from my own research.

We also discussed the recent papers that indicated BCR at 0.03 ng/ml and, while he was interested, he pretty much stuck to the standard 0.2 ng/ml definition of BCR and would be using it in the decision-making process.

I did mention that I’m in no rush to start anything (i.e., salvage treatments) until we know exactly what we’re dealing with, and that quality of life is high on my priority list if and when we get to that point.

So that’s that. No real surprises. No real revelations. Just keep on keepin’ on.

On that happy note, remember that September is Prostate Cancer Awareness month. (Hard to believe it’s only a week away! My time flies when you’re having fun…)

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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.

Month 68 – Waiting for the Next PSA Test

On By DanIn Prostate Cancer, Research, Treatment5 Comments

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.

Life After Radical Prostatectomy: 66 Months Later

On By DanIn Life After Prostatectomy, Prostate Cancer4 Comments

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.)

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 1,995 – Hard Conversations

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence3 Comments

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.

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.