Month 71 – More Studies on Early Salvage Radiation Therapy

On 11 October 201610 October 2016 By DanIn Prostate Cancer5 Comments

With the change in my PSA over the last year, you can bet that I’ve been seeking every bit of information as to what it means and what to do about it. One of my go-to resources for the latest information in the field has been The “New” Prostate Cancer Info Link.

On 21 September, they published the following blog post that really piqued my interest:

Very early salvage radiation has up to fourfold better outcomes and saves lives

It’s certainly a topic of discussion for my next urologist visit in December. By the study’s definition, I’m still in the “very early” group—the group with the best survival if salvage radiation therapy (SRT) is started while I’m still in that group.

If we have to go down that path, my biggest concern with starting SRT is knowing that we’re actually radiating where the cancer is located. That concern is amplified if imaging can’t show where the cancer’s actually at, and we just radiate the prostatic bed because that’s what makes the most sense. Why risk some long-term, potentially nasty side effects on something so uncertain? (Yes, I know nothing is certain dealing with cancer.)

Of course, this is just one study and making a decision on it alone would probably be unwise.

We’ll just have to wait for the December PSA readings to come back and go from there.

On a happier note, I took a little drive through the country last week to tackle a few things on my travel bucket list: October Odyssey: The Mountain West. Check it out if you want to see what it was all about.

Month 70 – Sharing Awareness

On 11 September 201610 September 2016 By DanIn Prostate Cancer4 Comments

We’re about half-way through Prostate Cancer Awareness Month and it seems as there’s been some progress in getting the word out. More organizations seem to be helping to increase awareness than in the past, and that’s a good thing.

I’ll have to admit that my own approach to PCAM has changed slightly. I’m more inclined to tell people to educate themselves before making the decision to test.

Those of us who have been dealing with prostate cancer understand how complex, convoluted, conflicting, and confusing it can be. If you’ve never entertained the notion that you can get prostate cancer, you probably haven’t paid much attention to the raging debates in the field. DRE or no DRE? PSA test or no PSA test? Over-treatment versus under-treatment? Active surveillance versus treatment? That’s why it’s so important to educate yourself before being tested.

One of my former managers always said, “If you can’t stand the answer, don’t ask the question.” Your decision to get screened for prostate cancer is exactly that: your decision. You have to be comfortable with either path you take, and the best way to make that decision is by being educated. Please take a few moments this month—Prostate Cancer Awareness Month—to learn more about prostate cancer and how it can affect you. You can start with my Resources page.

I finally made my family and friends aware of my detectable PSA shortly after my visit with my urologist in August. There was concern from those who responded but, on the whole, the reaction was good. I knew that sitting on this for a year would cause some deserved criticism, too, but they seemed to understand my rationale.

It’s a relief to have it out in the open now. As one of my readers wrote on his own blog, “A burden shared is a burden halved.” Yep. It is. (Sorry, I can’t find the quote again to give credit where credit is due!)

On the whole, I’ve been able to push aside the emotions and thoughts that the cancer may be returning, and it feels good to be reengaged in the world. The next PSA test is in December.

Now if I can just get used to the fact that it’s dark when my alarm goes off in the morning… It wasn’t that long ago that the sun shining through my east-facing bedroom window woke me up and not the alarm. Autumn and shorter days are here! (In San Diego, shorter days are about the only indicator of it being autumn.)

Day 2,113 – A Visit with the Urologist

On 23 August 2016 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…)

Day 2,093 – The Results

On 3 August 2016 By DanIn Emotional Aspects, Prostate Cancer, Recurrence13 Comments

The 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 1 August 20161 August 2016 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 68 – Waiting for the Next PSA Test

On 11 July 201610 July 2016 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 4 July 20163 July 2016 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 11 June 201610 June 2016 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.

Month 65 – PSA Debate

On 11 April 20161 December 2016 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 1,974 – PSA Blood Draw

On 6 April 201615 April 2016 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).