Seven Years

It’s been seven years since my prostate cancer diagnosis, and the fact that I’m still alive and kickin’ seven years later with relatively minor side effects from the surgery makes me realize how good that I’ve got it when I compare my situation to other prostate cancer patients. I say that not to boast or gloat; rather to acknowledge how blessed I am.

With an ever-so-slowly-rising PSA in my recent past, I know that the path ahead may become increasingly rocky and that my situation can change for the worse in the not too distant future. Or it may not.

As the navigator of the USS Brewton, I planned ahead and selected the best route for our ship to meet its mission. Now, in my current predicament, I wanted to take some time and reflect on what’s next for me and how I want to navigate my way through it all. (And I’m not talking treatment options; I’m talking life.)

Life is filled with competing interests and obligations and, if this silly cancer shortens the number of my days remaining, I want to make sure that those interests and obligations are prioritized. I don’t think that I’ve squandered the last seven years by any stretch of the imagination, but I’m not sure that I’ve gotten the most out of them, either.

The best way for me to evaluate my priorities and map out a course was to escape my daily routine and go on a trip where I could be alone with my thoughts. So I do what I always do when I need to clear my head of the daily noise: I get in my car and drive.

My road trip last month through the Sierra Nevada mountains was transformative for me.

Sunrise on Mount Whitney

Once I started climbing over the boulders of the Alabama Hills in the pre-dawn darkness in hopes of capturing the sun illuminating the face of Mount Whitney, my photography became my singular focus of the trip (excuse the pun). It was refreshing to concentrate on something other than cancer. Not only was it refreshing, it was fun!

There was also something rejuvenating about being surrounded by nature, even on those brisk 24° F / -4° C Lake Tahoe mornings. You couldn’t help but feel alive.

Through all of it, I never directly tackled my self-imposed homework assignment. I never sat down and wrote a list of priorities (as I’m usually wont to do). In the end, I didn’t need to. Just the act of being, of playing, and of focusing on something other than cancer did that for me in a way that was far more powerful than had I sat down and created a spreadsheet. And that is what has been transformational for me.

As I enter my eighth year of this adventure, rather than worrying about the latest study on defining biochemical recurrence or what the results of my next PSA test in the first week of December will be, I’m going to worry about how, where, and when I can push myself to be better at my photography, all while enjoying the great natural world around us (except, of course, those rocky shoals us navigators avoided at all costs).

There are some other professional and personal goals that I want to tackle as well, but I’m going to keep those to myself for now.

It also means that I may be stepping away from some things that, while still meaningful to me, just don’t carry the weight that they used to. There just aren’t enough hours in a week to do it all.

That trip reminded me that there is life outside of cancer. I needed that reminder. Badly.

Sierra Sunrises, Solitude, and Sorrow

If anyone’s interested, here’s the write-up on my recent trip through the Alabama Hills, Manzanar National Historic Site, Ancient Bristlecone Pine Forest, Bodie State Historic Park, Lake Tahoe, Reno, and western Nevada, including an emotional stop in Las Vegas. —Dan

Travelin' Dan

Sometimes the vacation you had imagined in your head doesn’t develop as you thought it would, and that’s not always a bad thing.

This was meant to be a trip where the primary mission was photographing some of our natural wonders. Inspired by landscape photographer, Thomas Heaton out of the U.K., I wanted to slow down, look for compositions, set up the tripod, and take the shot. I had done a little homework, determining sunrise, sunset, and moonrise times throughout the trip at the locations I wanted to visit, and I was keen on being in Lake Tahoe for the full moon.

Of course, the secondary mission for this trip was to see something new—to color in another part of my travel map that was empty. In this case, I was looking to experience western Nevada and bits of Arizona and California on US 95.

My initial concept for this…

View original post 5,221 more words

Month 83 – Forgetting about Cancer

I’ve really got nothing to report this month other than the fact that I just spent the last 9 days on the road on a wonderful vacation through the eastern Sierra Nevada mountains, Lake Tahoe, and western Nevada.

The purpose of the trip was to get out and do some serious photography, and focusing on that allowed me to forget about PSA tests, cancer, and all the other crap that goes with it for a while. It was refreshing.

I usually publish a full-blown write-up of my trip on my other blog, Travelin’ Dan, but my creative juices must still be on vacation, because I’m struggling to put that post together at the moment. I also need to sort through 768 photos and process the best for the blog.

In the meantime, here’s a sneak peak at some of what you may see later when I finish my trip overview. Enjoy!


PCF Article: New Biomarker Predicts Metastatic Prostate Cancers

Here’s an interesting article from the Prostate Cancer Foundation about a potentially exciting development in the ability to determine which prostate cancer tumors are more likely to metastasize.

New Biomarker Predicts Metastatic Prostate Cancers

Month 82 – Reviewing PSA Results with Doctor

At this afternoon’s visit to the doctor to review my August PSA results, he asked, “How are you doing?” I replied, “I’m hoping you’re going to tell me.” “With a PSA of 0.09, you’re doing fine.”

I have to admit that I wasn’t quite psychologically prepared for that answer. Nor was I really prepared for the conversation that followed. But before getting into that, the bottom line was just as I expected: Continue to monitor PSA on a four-month cycle, which has me back in the lab in early December.

This was a new doctor that I hadn’t seen before and he was definitely more seasoned than the last one that I had. Still, all those years of experience could have taught him some better communication skills. He talked in broad generalities and in circles—even in response to my direct questions—and that was more than frustrating.

On the topic of recurrence, he didn’t think that I should be so quick to assume that an increasing PSA is indicative of recurrent cancer. He offered up the possibility that it could have been some benign prostate tissue left behind after the surgery and has grown enough where it’s detectable on the PSA test. Or, it could be cancer.

On the topic of PSA tests in general, he reminded me that the really old threshold for biochemical recurrence was 0.4 ng/ml before it was lowered to 0.2 ng/ml. It seemed that he valued the ultra-sensitive PSA test only as it related to the post-surgery pathology. If the pathology was bad, he seemed to put more stock in the ultra-sensitive PSA; but if the pathology was good, he seemed less inclined to put stock in it.

In other words, if you had a 4+3 Gleason score, positive margins, seminal vesicle involvement, or lymph node involvement—or some combination thereof—he would be more likely to consider acting on a 0.09 ng/ml PSA. But it my case with a 3+4 Gleason, negative margins, and no seminal vesicle or lymph involvement, my sense was that his response to my 0.09 PSA was a pretty nonplussed, “Meh.” Or, if my PSA gets to “around 0.13 ng/ml,” we might start exploring treatment options.

On the topic of doing additional testing such as scans to see if there is cancer anywhere, he said that nothing would show up on a scan or MRI with a PSA of 0.09. I want to dig into that some more.

On the topic of salvage treatments, he thought that, given my pathology, the first step would be “a little radiation.” (I’m not sure if sprawling out on the beach for 7 weeks qualifies for “a little radiation,” but it may be worth asking.) He wouldn’t do ADT (hormone therapy) in conjunction with the radiation, again, given my pathology.

Lastly, at one point during the conversation, he quite confidently made the bold prediction that I wouldn’t die from prostate cancer. You think I’d be jumping for joy. I’m not. Perhaps its my experience as a seasoned patient that’s telling me to withhold judgment on that one for the time being.

All in all, this is good news. My lack of enthusiastically embracing it, however, comes from the fact that, rather than eliminating variables to consider, I feel that this meeting introduced a few more, and that just muddied the waters. Emotionally, at this point, I just want this stupid disease to pick a path and stay on it. I may also check with the VA to see if there’s any way I can pick one doctor that I can build a relationship with rather than this new-doctor-a-quarter routine.

September is Prostate Cancer Awareness Month

September is National Prostate Cancer Awareness Month, reminding us that one in seven men will be affected by prostate cancer in their lifetimes. It’s also a good reminder to take a few moments to learn more about the disease, the ongoing debate concerning screening for prostate cancer, its symptoms (or lack thereof), and the myriad of treatment options should you happen to be that one in seven.

There are plenty of resources out there from which you can learn. Schedule an appointment with your physician and have an open, honest discussion about your risks and whether or not you should be screened. In the end, it’s important to remember: It’s your body, your choice.

Please share this important reminder with the men in your life.

Medical News Today’s “The 10 Best Prostate Cancer Blogs”

Medical News Today, a healthcare publishing company out of the United Kingdom with offices in the U.S. and Taiwan, published its article, The 10 best prostate cancer blogs.

Needless to say, when I received notification from the editor that my blog was on the list, I was surprised and more than humbled—especially considering who is publishing the other blogs on the list.

Thank you Medical News Today for the recognition and thanks to those who have been following along for all these years. I’ll keep doing what I’ve been doing—sharing my ongoing story with others so they can gain some insights from one man’s experience with prostate cancer over time.

Month 81 – PSA Threshold for Salvage Therapy Survey Results

In last month’s post, I asked readers to complete a short survey to get a better idea of the PSA threshold that would dictate the beginning of salvage therapy. The survey asked:

  • How their medical teams defined “undetectable” PSA levels.
  • How their medical teams defined biochemical recurrence after a prostatectomy (what PSA level).
  • At what PSA level did they and their medical teams decide to begin salvage therapy.
  • How long after PSA biochemical recurrence was it before salvage therapy began.

Before going into the results, I first want to thank those who took the time to participate. You may view the results using the link below:

Salvage Therapy Treatment Survey Results

I could have designed the survey better. I probably should have asked for post-surgery Gleason score and pathology to see if there was a correlation between a higher Gleason score and acting earlier at a lower PSA level. The sample size is small enough where it’s not statistically significant, but there were some interesting observations:

  • The definition of “undetectable” generally ranged from <0.01 to <0.1 ng/ml. I believe that to be a reflection of whether the traditional PSA test or the ultra-sensitive PSA test is being used.
  • The consensus for the definition of biochemical recurrence seemed to be 0.2 ng/ml.
  • The PSA level at which some sort of salvage therapy began was widely spread between 0.17 ng/ml and 3.5 ng/ml.
  • The time to begin salvage therapy after biochemical recurrence varied from one to 35 months.

[Note: I’ll keep the survey open for a while longer and new responses may skew the summary above.]

For me, there aren’t any real “A-ha!” findings that provide clarity, and I expected that going into this exercise. The only thing that’s clear is that each case is unique—from both the patient’s perspective and the medical team’s perspective—and that means that my numbers will be different from your numbers and those will be different from Sam’s numbers and all of us will act (or not) on those numbers differently.

It is nice to know, however, that my medical team is in alignment with others on some of the measures.

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….In addition, a total of 208 articles reported 99 different definitions of biochemical failure among those treated with radiation therapy.” [Emphasis added.]

No wonder there’s confusion among us patients!

For me, the key statement in that paper was, “The Panel acknowledges that the clinical decision to initiate treatment will be dependent on multiple factors including patient and physician interaction rather than a specific prostate specific antigen threshold value.”

It’s up to us.

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.]

Day 2,459 – PSA Results

My silly little trend line that I slapped on my PSA tracking chart wasn’t so silly after all. It was dead on target. My latest PSA: 0.09 ng/ml.

Crap. (Or some other four-letter expletive.)

Even though I expected this (thanks, trend line), I’m still absorbing the significance of yet another increase in my PSA.

In a way, I’m glad to see the results that I have. Certainly not because I want the cancer to come back, but because it removes some of the doubt caused by the yo-yo readings last year. Now I can come to terms with the likelihood that I really am headed down the recurrence path, and I can focus on what’s ahead.

So those are my thoughts in the first 30 minutes since seeing the results online. I’m sure there will be more thoughts to follow. I have to admit that I’m unusually unemotional about this at the moment. That’s good.

I’m sure I’ll have more thoughts to share once this sinks in.