Day 2,460 – The Day After

It’s Saturday morning, I’m up, and the birds are chirping outside the window. All good things.

The other good thing is that, for now, I’m remarkably at peace with last night’s PSA results. There’s no anger. No sadness. No real fear. That’s a good thing, too. Wasting emotional energy won’t do anything to change the result.

Another good thing is that it’s taken two years for my PSA to get to this point, and it may take another two years before it hits the traditional 0.2 ng/ml recurrence threshold. That’s time, and time is a good thing.

So what’s next?

My appointment with my doctor isn’t until 12 September and we’ll have a lengthy discussion then. I’m okay with the delay; it allows me time to put together my questions and concerns.

One of the concerns that I will raise yet again is the PSA level at which recurrence is defined. For years, the 0.2 ng/ml threshold has been the accepted standard. However, based on more recent studies, it’s becoming increasingly accepted in the prostate cancer world that salvage treatment should start much earlier.

Studies out of UCLA and Johns Hopkins suggested that a PSA of 0.03 ng/ml using the ultrasensitive PSA test can be predictive of recurrence. In that case, I’m about 18-24 months behind the 8-ball. Another study out of Germany released in May 2017 suggested recurrence be defined at 0.1 ng/ml, which I’m just shy of (time for one more Maß of beer at Oktoberfest!). And just to prove that I’m not nuts obsessing over the definition of biochemical recurrence, a somewhat dated research paper (2007) showed “a total of 145 articles contained 53 different definitions of biochemical recurrence for those treated with radical prostatectomy.” [Emphasis added.] No wonder there’s confusion among us patients!

You can see why, then, it’s so confusing and frustrating when recurrence is being defined by different groups as anywhere between 0.03 ng/ml and 0.2 ng/ml and your numbers are smack-dab in the middle of that range. Either my cancer is back or it’s not. It just depends on who you ask.

For my own sanity at this point, it’s just easier for me to accept the idea that the cancer is back, period. I can’t keep going on the emotional roller coaster ride of “Is it or isn’t it?” Given two years’ worth of upward-trending data points when there shouldn’t be any PSA at all, it’s a fairly safe bet that the cancer is back. I genuinely don’t think I’m getting ahead of myself and, if I’m proven wrong at some point in the future, I’ll eat my words and we’ll have one hell of a party. (Oktoberfest, anyone?)

Treatment options for me include salvage radiation therapy (SRT), androgen deprivation therapy (ADT) (hormone therapy), a combination of both and, perhaps chemotherapy. There are also newer options out there that I need to get more familiar with. Of course, there’s always the option to do nothing, too (it’s not as crazy as you think).

Salvage Radiation Therapy

Radiation therapy usually targets the prostatic bed—where the prostate used to be—on the assumption that that’s where the residual cancer cells are hanging out. But the insidious thing about prostate cancer is that microscopic cells could be anywhere in the body and never get picked up by any scans or imaging. You can blast the crap out of your prostatic bed—risking increased incontinence, complete impotence, and bowel control issues—but not get all the cancer. In fact, one study shows that only 38% of SRT patients are disease-free at five years after their radiation therapy. Other studies put the number at around 50%. SRT can be curative, however, in those patients where it worked.

I’ve also seen conflicting guidance about SRT. On the one hand, “men with Gleason scores of 7 or lower, no cancer found in their seminal vesicles and lymph nodes, and increases in PSA several years after surgery were more likely to have a local recurrence of cancer—which means their cancer may still be cured with external-beam radiation to the prostate bed, where some residual cancer cells may be hiding.” (Walsh, 2nd ed. 381) I fit all of those requirements and would be a candidate for SRT.

On the very next page in Walsh, however, it states, “Radiation was also not likely to help men who had negative surgical margins. This is logical…because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area (and thus can be treated with radiation).” I had negative margins. The one thing that troubles me in that passage is the word “persists” because it implies the patients’ PSAs never went to undetectable after the surgery like mine did. That may make a difference in applicability.

Then there’s this little tidbit of information from the New Prostate Cancer Infolink: “There is an open controversy as to whether salvage radiation therapy, even if given after biochemical recurrence (a confirmed PSA ≥ 0.2 ng/ml), translates to a survival benefit. Fewer than a third of patients with a post-prostatectomy biochemical recurrence experienced systemic progression, and it takes a median of 8 years for distant metastatic progression, and 13 years for mortality to occur, according to a Johns Hopkins study (by Pound et al.).”

Androgen Deprivation (Hormone) Therapy

Prostate cancer feeds off of testosterone, and androgen deprivation therapy is a means of starving the cancer cells of testosterone. It’s the equivalent of chemical castration. There are two types of ADT: one stops the production of testosterone and the other stops the cancer cells from absorbing the testosterone. But here’s the kicker: there are androgen-independent cancer cells out there that will not be affected at all by either therapy, and they’ll just keep growing. ADT is not a cure; it only prolongs life.

ADT has some nasty side effects: depression, fatigue, hot flashes, anxiety, increased risk for other diseases (diabetes, cardiac issues), weight gain, osteoporosis, loss of libido, irritability, and others. Some of these side effects are so debilitating in some patients that they can no longer work and have difficulty functioning in their daily lives. (Yes, that’s a worse case scenario, but from my anecdotal observations of ADT patients online, side effects do have a significant impact on many of them.)

Another option to eliminate the majority of testosterone production is through surgical castration (gulp!). That may reduce some of the side effects, but not all.

Lastly, there’s debate as to when to start ADT and how to administer it. Some argue that you should start early to slow the growth; others argue that you wait until the end so that it can be helpful in tumor and pain management; yet others argue between whether it should be administered continuously or intermittently. Interestingly, studies have shown there is no statistical difference in outcome whether you start ADT early or late—the result is the same. (Walsh, 2nd ed. 473, 476-477) The only difference is that, if you start early, you suffer from the side effects for a much longer period.

Doing Nothing

Of course, the last option of doing nothing has some merit, too.

I’m not keen on being radiated, especially if we don’t know without a high degree of certainty that the cancer is still in the prostatic bed. I mean, really, if I’m going to risk peeing and pooping in my pants and never having an erection again for the rest of my life (perhaps slightly exaggerated) for just a 38% chance that I’ll be cured… That requires some thought.

The same thing with starting ADT early. If you’re going to be depressed, curled up in a bed 20 hours a day, unable to work or function just so you can extend your life for a few months or years, and the outcome is going to be the same as if you started ADT late, is that really worth it? Is that living?

None of us are getting out of here alive, and doing nothing isn’t “giving up.” In fact, when the side effects of the treatment may be worse than the disease itself, I view doing nothing as a way to say, “F–k cancer!” If I can squeeze a whole lot of living into the next 10-15 years without side effects of treatment impacting my quality of life and preventing me from truly living, why wouldn’t I do that? Sure, it’s a crappy hand that I’ve been dealt, but I’ll just come to terms with it and play it out. Again, none of us are getting out of here alive, and the notion of extending life at all costs just for the sake of extending life doesn’t sit well with me. Quality over quantity is important to me, and I’m sure there’s a balance in there somewhere.

A study done in 2005 at Johns Hopkins looked at various factors—Gleason score, PSA doubling time, and time from surgery to the return of PSA—and determined the likelihood that you will not die from prostate cancer based on those measures. Based on my numbers (Gleason 7, PSA DT more than 10 months, and return of PSA more than 3 years after surgery), I have a 99% chance of being around in 5 years; a 95% chance of being around in 10 years; and an 86% of being around in 15 years. (Walsh, 2nd ed., 386-390) Again, what’s not clear from that summary is what, if any, treatments patients had during that time. Bottom line: I’m not going anywhere anytime soon.

Have I come to a decision? Of course not. It’s far too early and there are far too many conversations that need to be had with medical teams, and much more research to do. It will also be interesting to see if we stick to the four-month PSA test cycle or increase the frequency now. Based on my last conversations with the VA doctor, I suspect that we’ll keep to the four month cycle and consider acting once the PSA hits the 0.15 mark or so. (They’re pretty tied to the 0.2 ng/ml number.)

The one thing I want to understand much better is what percent of patients are impacted by the treatment side effects and to what degree. I’ve already got a decent idea—the numbers are relatively small—but I need to zero in on that in my research.

One last bit of good news. Advances are being made in prostate cancer research every day, and perhaps there’s something in the pipeline that will be of use in the near future.

At least now you have a better idea of what’s ahead and how my pea-sized brain is processing all of this at the moment.

It’s now well into the evening here in San Diego (took a break in the middle of the day) and time to figure out where those chirping birds went to escape the heat. That, or plan a trip to Oktoberfest.

[I hope I didn’t offend or scare anyone.  I also respect each and every person’s decision for their own treatment options because what they chose is right for them and their personal circumstances.]

Month 64 – Rethinking How Aggressively to Treat Cancer

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 Cancerrecommending 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.

c76ae-cautionsymbolsmall

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).

Month 59 – Resigned

It’s been an interesting month, that’s for sure.

The emotional roller coaster ride of learning that my PSA moved upward has come to an end for now. In fact, I’ve pretty much resigned myself to the fact that it is what it is, and there’s little that I can do about it other than wait.

Have I resigned myself to the idea that the cancer is coming back? I don’t know. Perhaps. I certainly don’t want it to come back, but I’m coming to terms with the fact that it’s within the realm of possibility in a way that it hadn’t been before the increase in PSA. If I’ve resigned myself to anything, it’s that I’ll have plenty of PSA tests going forward, along with the associated anxiety that comes with each.

I remember my surgeon telling me there’s an 80% chance that I’ll be cancer-free at 10 years, so that means that there’s a 20% chance that it will be back. For some reason, my gut instincts are telling me that I’ll be in that 20%. I don’t know why. Perhaps it goes back to my first solo trip abroad.

I was flying from the United States to Japan as a midshipman going on my summer training cruise, and I was flying on a military charter that landed at Yokota Air Force Base. On arrival, they told us that 20% of us had been selected at random to go through a thorough customs inspection. I was one of the 20%. They dumped my duffle bag’s entire contents onto a nice stainless steel table, went through everything, and told me to repack it in less than 5 minutes. Just my luck.

I know. A silly comparison. Still, it’s how my luck runs sometimes. December will be an indicator as to whether that rule will apply or not.


I’ve been battling an early season cold for about two weeks now, and it just doesn’t seem to want to let go. The stress incontinence was remarkably good during the first week, but when the cold moved into my chest the second week, I went back into pads for protection as I coughed and coughed.

Perhaps the stress of the PSA results weakened my system a tad, but most likely, it’s just that I work in a museum where lots and lots of people–especially kids–come through.  Oh well.

DJTPC

Life After Radical Prostatectomy: 54 Months Later

So it’s been four and a half years since my radical prostatectomy.  How am I doing?  (Remember, what follows is a graphic description, so proceed only if you want to read…)
Continue reading “Life After Radical Prostatectomy: 54 Months Later”

Month 55 – Sick of Being Sick

I hate getting sick.

The week before Memorial Day weekend, I came down with a nasty end-of-spring head cold that kept me home from work a couple of days.  It also put me back into incontinence pads.

Heavy coughing certainly increased the likelihood that I would have stress incontinence episodes, so I started wearing pads as insurance.  I’m glad that I did, because several times they were definitely needed.  I will admit, however, that I did better than I expected in many cases, and I attribute that to my recent weight loss.

The one thing that I’ve had difficulty controlling is stress incontinence while I’m standing.  If I’m standing or walking when I sneeze or cough, there’s a much greater likelihood of leakage, no matter how hard I try to control my pelvic floor muscles.  That’s where the pads came in really handy.

The unfortunate thing with this head cold is that, even though the worst of it lasted only a couple of days, the nagging cough lingered for a good week and a half after.  Ugh.

The moral of this story: Keep pads on hand for those unexpected times when you may need them.

This recent Prostate Cancer Foundation article, Excess Weight Linked to Worse Prostate Cancer Diagnosis, reinforces my will to keep losing weight.  Sure, it may be a case of me closing the barn door after the horses have escaped, but getting to a healthy weight can only be a good thing in the long run for a whole host of reasons.

 

 

Month 54 – Walking for Better Outcomes

I came across this article, Walking Boosts Outcomes for Prostate Cancer Survivors, on the Prostate Cancer Foundation website a few weeks ago, and it struck a chord with me.

When I began my weight loss regimen back in December, I made a concerted effort to increase my physical activity, mainly in the form of walking.  I’m not close to the level of activity that is talked about in this article, but it has helped with losing weight and with mitigating some of the minor side effects I had been experiencing post-surgery.

I know it’s only anecdotal observation on my part, but I feel that the number of stress incontinence episodes are down and, when I do have them, they’re not as significant as they once were.  I’d like to say, too, that it’s improved my erectile dysfunction, but, if I’m being honest, I’m not so sure that it has.  If it has, it’s only been slightly.  At least things aren’t getting worse.

Month 52 – Less PSA Testing; Rise in Prostate Cancer

Wow.  It didn’t take long for this to happen.

You may recall that in 2012, the U.S. Preventive Services Task Force (USPSTF), recommended abandoning PSA screening of any men of any age.  (In 2009, they recommended no screenings for men over 75.)  Now there’s early research showing a 3% per year increase in intermediate and high-risk prostate cancer cases.

The article, Did PSA Test’s Decline Spur Rise in Prostate Cancers, cautions that this is only one study, but that there was a measurable difference since the change in USPSTF guidelines:

Between 2011 and 2013, the study authors noted a 3 percent per year increase in the percentage of prostate cancer patients who had a PSA level of 10 or higher at the time of their diagnosis. PSA levels of 10 or more signify intermediate or high-risk prostate cancer.

Further studies, of course, are needed to confirm these findings.  But if they are confirmed, this could be quite troubling.

The rationale behind eliminating PSA screening was that too many men were being over-treated and suffering life-long side effects impacting quality of life, when they could have lived a relatively normal life with a slow-growing cancer inside them that would have never killed them.

If I were starting this journey today, I’d want to have the formerly routine annual PSA tests and then scrutinize my treatment options very carefully.  I would not want to wait until I became symptomatic and discover I have a PSA of 10 or more on initial diagnosis.

*     *     *

As far as my personal status is concerned, I continue to lose weight (now 23 lbs. / 10,4 kg since 1 December 2014), and my occurrences of stress incontinence continue to decline.  (The were pretty infrequent before, but even less so now.)  Sexual function seems to be about the same or just a tad better.

Month 51 – Weight, Incontinence & New Screening

Last fall, I could feel my clothes getting a little tighter, but every time I stepped on the scale, it showed me right at my usual weight.  But when I went to the doctor and stepped on his scale, I was startled at what it read.  Bottom line: My scale was inaccurate and I had managed to creep up to my heaviest weight ever.  It was a real wake-up call.

I have to wonder if my weight was impacting my stress incontinence.  It seemed as though I was having more incidents of it than normal.  Sometimes, I simply attributed it to being tired, because I do know that when my body is tired, the incidence level goes up.

I’ve made a concerted effort to lose weight.  Since 1 December 2014, I’ve managed to lose 17.9 lbs (8 kg) and I feel much better and my stress incontinence has returned to what it was before.  I’m still well above my optimal weight, so I’ll keep at it to see if I can continue to lose weight and hopefully make improvements.

I know this is all anecdotal, but I’ll keep monitoring it and discuss it with my urologist during my next visit (which isn’t until September, so hopefully, I’ll have lost some more weight by then).

*     *     *

The Prostate Cancer Foundation recently reported the findings of a study that uses MRI technology in conjunction with biopsies and ultrasounds to be able to better distinguish between high-risk and low-risk prostate cancers.  This is exciting news.  If proven out, this could minimize overtreatment of patients with low-risk cancers, and allow those with high-risk cancer to be treated more aggressively.

Month 44 – LARP at 42 Months

On July 4th, I was three and a half years out from my surgery, so I added a new page:

Life After Radical Prostatectomy – 42 Months Later

It’s pretty much a reflection of my new normal, so please check it out.

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Interestingly, about a week ago, I had three consecutive nights where I was running to the bathroom to pee about 4-5 times each night.  I’m not sure what was up with that, but it made for some cranky, sleep-deprived days afterwards.  I wasn’t drinking any more than I normally do, so it wasn’t as though there was extra fluids to process.  Odd.  Oh well.  Back to sleeping through the night.

Month 41 – Biological Update

We’re going to jump right in with this post…

BIOLOGY AHEAD
 
My niece and her three and a half-year old daughter came to visit for their spring break, and we were able to get out and do a lot of fun things together. By the second day, my niece was chiding me about how many times I was going to the bathroom, and that got me to thinking, “Am I going more than usual?” Or was it just her perspective.

In retrospect, I probably was running to the bathroom a tad more frequently. Mainly because we were on the go, outside in cool air a good chunk of the time, and I never knew where the next bathroom might be, so I took advantage of using the ones nearby. (And, no, I’m not talking every 20 minutes. It was every couple of hours.)

As I explained to my niece, it’s more that I have the urge or sensation that I need to go, than I actually do. When I get to the bathroom, not much comes out. Fortunately, the urges aren’t the, “Oh my God, I need to find a bathroom in the next 30 seconds or I’m going to pee in my pants,” kind of urges. But they’re there and they’re telling my brain it’s time to go when my bladder really could last a bit longer. That can be frustrating.

And on the sexual function front, I’ve been quite pleased there. I’ve had much better erections (near 100%) in the last month–all without chemical assistance. Not bad for having only one nerve bundle. As I’ve said before, be patient; let nature do its thing.

So that’s it for this month. Quick and simple.


Late update: I’d encourage those recently diagnosed to read a comment left by another reader, J.R., on the “Life After Radical Prostatectomy – 36 Months Later” page.  It’s an interesting perspective, and I tend to agree with him.  Losing sexual function is more difficult to adjust to than many people, including myself, thought it would be.