Day 2,717 – The Discussion

I hate this flippin’ disease.

My discussion with my urologist went pretty much exactly as I suspected it would, but with a few twists to screw with my mind a little. One of those little twists, however, happened much earlier than the meeting.

This morning as I was shaving, there was this strong sense of fear that hit me, tying my stomach in knots. That was completely unexpected and unfounded because I had a good idea of what was going to happen with the doctor. Even so, it was something that took control and definitely set my mood for the day.

When the doctor entered the exam room, I told him about my propensity to just verbally vomit all over the doctors before they even had a chance to explain their interpretation of my results. I shut up and let him talk away (with my battery of questions at the ready on my lap).

Pretty much everything that he said were things that I already knew:

  • The increasing PSA is a concern, but the slow rate of increase is a good thing.
  • That salvage radiotherapy would be the likely next step.
  • Given my pathology and history, it’s likely that the cancer is still in the prostate fossa.
  • Starting salvage radiotherapy earlier rather than later has typically shown to have better outcomes.
  • We have no guarantee of knowing where the cancer is at, so the radiotherapy may be ineffective.
  • Current imaging technologies aren’t good enough to detect the cancer’s location.
  • There’s no cut-and-dry set of numbers that would dictate specific actions.

The one kicker that knocked me for a loop was something that he said as we were reviewing my PSA tracking chart (I had to bring a copy of that, of course). He did mention the possibility that what we’re tracking may actually be benign prostatic tissue left behind that’s causing the PSA to rise. His reasoning was the fact that it took 54 months for the PSA to become detectable again and its slow rise ever since. He suspected that if the cancer was returning, the PSA would be climbing more rapidly. That, of course, would be great news. He didn’t assign a probability to his theory being right, however.

He did ask if I would be open to a referral to a radiation oncologist to at least begin the discussion and get educated. I said that, if he hadn’t suggested it, I was going to request it, so, yes, I was open to the referral. I don’t have an appointment on the calendar for that yet—they should call in the next few days.

I did mention the PSMA imaging trial that’s going on at UCLA and he was supportive of me looking into it. He cautioned, though that it is a trial and there’s no way to know yet how effective it may be. To be honest, it’s been a while since I looked at the trial page and I’m not sure that I would qualify to participate if it’s still ongoing. Something to dig into.

Lastly, he said there’s no need for urgent action at the moment. We’ll continue the four-month PSA test cycle for now. That will have me in the lab the first week of August.

When you get your care through the Veterans Administration (VA), as I do, you rarely see the same doctor twice. I mentioned that to this urologist and commented that, in a way, it’s a good thing because I’m getting multiple opinions and perspectives. He was taken aback by that comment, saying, “That’s a charitable view. I usually hear the opposite.”

He’s the second doctor who’s mentioned the possibility of this being nothing more than benign prostate tissue left behind that’s causing the PSA to return and rise. Perhaps I need to put a little more stock in that theory. But after spending two years wrapping my head around the notion that the cancer is returning—a mentally and emotionally exhausting exercise—when you hear something like this, it really screws with your mind. Or at least it does mine. It’s one more variable added to an ocean of uncertainty when you’re desperately seeking solid land.

The good thing is that I have time, and time may bring a little more clarity on which to base a decision at some point in the future. In the meantime, I’ll just don my kapok life preserver and bob around in that ocean of uncertainty reflecting on how much I hate this flippin’ disease. (Yes, I’m dating myself with the kapok reference.)

 

 

Day 2,710 – Let’s Talk

If you aren’t pushing your personal boundaries, you aren’t living, right? Well, tonight I tried something that I’ve never done before.

I was the guest speaker at the Riverside (California) Medical Clinic Charitable Foundation’s monthly Prostate Cancer Family Support Group meeting. (Yes, I’ve spoken in front of groups before, but never about prostate cancer.)

I didn’t want to say anything about it in yesterday’s post in case it turned out to be an unmitigated snooze-fest. It didn’t. (Whew!)

A special thank  you to Linda, Megan, and Briana for discovering my blog, extending the invitation, coordinating the visit, and making me feel welcome. An even bigger thank you to the members of the support group for allowing me to share my story and for being engaged in the discussion. I wish you only the best as you travel down your own path.

Oh. I’m sorry to report that only one of the three awesome chocolate chip cookies survived the drive back to San Diego.

Thanks again!

—Dan

Riverside Medical Clinic

Month 89 – Moving Forward

I wasn’t expecting that.

You would have thought that, with me confidently predicting that my latest PSA number would climb, I would have been relatively okay after getting the results Thursday night. Not so. Friday, I plunged into a deep funk, and my ability to concentrate at work dropped to a 2 or 3 on a scale of 10. Not good.

To combat the funk Saturday, I distracted myself by going down a relatively mindless rabbit hole on YouTube. (I know, not my proudest moment, but it worked.) One of the videos that I watch was from a young landscape photographer, Dave Morrow, that was entitled, How Quitting Social Media Changed My Life & Photography. That piqued my interest, so I spent 11 minutes watching it (video below).

As a bit of background, I was really opposed to joining Facebook and other social media years ago. I successfully resisted joining despite pressure from family and friends. In fact, this very blog arose from my disdain for Facebook yet wanting to be able to keep everyone informed about my situation.

But when I started working at the museum, we had a Facebook page for our volunteers and, as volunteer coordinator, I thought it was important to understand how to use it. I set up my own Facebook account as a playground to learn. That was four years ago, and I have to admit that I’ve been sucked into the Facebook vortex over time, spending more hours on it than I should.

The key takeaway for me in Dave’s video was when he said that he took all of the time and energy that he put into social media and devoted it to the things he enjoys and is passionate about instead. That was one of those “Ah-ha!” moments that we all knew about but had to relearn.

Regular readers of this blog will know that one of my favorite things to do is throw my camera in my car and drive. That’s precisely what I did on Sunday and, like the YouTube marathon, it, too, chased away my funk as I took a one and a half mile midday hike in the Anza-Borrego Desert State Park. (Perhaps not the wisest idea in the 90° F / 32° C heat.)

Tonight, rather than heading directly home from the office and hopping on my tablet to get caught up on all the social media postings, I opted to take an hour-long stroll up and down the beach, trousers rolled up to the knees, barefoot, ankle-deep in the incoming surf. It was delightful. (Note to self: Throw a pair of shorts in the trunk so I don’t look so geeky in trousers on the beach. Just a thought!)

I haven’t been on social media since Saturday—it’s been quite refreshing—and I’ve followed Dave’s advice and used that time for more enjoyable endeavors. Yes, it’s been a bit of a challenge not to look on Facebook, but I’ve resisted so far. Will I completely delete my accounts? Time will tell. There has been some advantage in using social media to connect with old friends, to remain connected with those half a continent away, and to even connect with fellow prostate cancer patients.

Dave’s insights were more from a developing and growing his business perspective, but obviously, they could be applied in a personal setting as well. Disconnecting from social media allows me the time to move forward doing things that I enjoy—walking on the beach, hiking in the desert, or snapping a photo or two. Each of those help combat the emotional funk.

Who would have thought that a YouTube video about managing a photography business would have reminded us that we need to eliminate those things that don’t add value or bring joy to our lives, and focus on those things that do?

I wasn’t expecting that.

Day 2,703 – PSA Results

The bad news: My PSA continued its upward climb to 0.11 ng/ml. The good news: The rate of increase remained constant (and is still quite slow).

The result is exactly where my spiffy spreadsheet said it would be, so I’m not overly surprised. All that’s left to do now is wait for my appointment with the urologist on 19 April. I’ll have to do my best to let him speak a little before I assault him with my already prepared list of questions.

This result reinforces my belief that it’s time to bring a radiation oncologist into the discussion so I can get his or her perspective on salvage radiation therapy, especially regarding the risks of long-term side effects impacting quality of life and the likelihood of success.

More to come…

PSA 20180405

Day 2,701 – PSA Test Time

Yep. Another four months have elapsed and Count Dracula nipped on my arm once again. I should be able to see the results online late Thursday night if historical patterns hold true.

It’s funny. I’m at the point where I’m not at all worked up about the results. In my mind, I’ve already reconciled that they’ll likely come back slightly higher than the last time (0.10 ng/ml). There’s not a damned thing that I can do about it, so why worry? I’ll save that for The Decision.

Of course, I can’t let a PSA post go without a spiffy chart. Remember, the blue data points are my actual historical PSA readings; the red data points are predicted future PSA results.

I don’t want to say that the “Decision Zone” is purely arbitrary, because it’s not. Studies show that earlier salvage radiation is more effective, plus my doctor was suggesting we start thinking more seriously about what’s next when the PSA hits 0.15 ng/ml, give or take a hundredth of a nanogram or two.

I also know that, as the PSA continues to grow, the linear trendline will likely become more of a curve with an increasing slope.

My trendline predicts today’s PSA will come in at 0.115 ng/ml. Stay tuned for the actual number…

PSA with Predictive Trend 20180329

Month 88 – Ready for Next PSA Test

It’s not often that I want time to pass more quickly in order to get to my next PSA test, but this time it’s different for some reason. I’ve been really anxious to have 3 April roll around to get this over and done with. Perhaps it’s because I suspect that this test will be the tipping point that finally gets me into real decision-making mode.

Of course, I would prefer not to see my PSA continue its gradual climb, but I suspect that it will. My spiffy little spreadsheet predicts a value of 0.115 ng/ml, up from 0.10 ng/ml. Let’s see how accurate its predictive powers are.

On a related note, I’m fairing much better than I was in my last blog post. How did I manage the emotional turnaround? One word: Disconnect.

I disconnected from my prostate cancer forums and from the good old Google machine in an effort to maintain some semblance of sanity, and it worked. That doesn’t mean that I quit them altogether or didn’t read the occasional article that popped up in a news feed, but I stopped actively researching for now.

Sure, there hasn’t been a day that’s gone by where I haven’t thought about my predicament. That’s only normal. I just don’t dwell on it like I did four weeks ago, and that’s improved my mood and focus considerably. Depending on my PSA results (I should be able to retrieve them online on 5 or 6 April), my mood and ability to focus may go out the window again. My appointment with the urologist is on 19 April, and one point of discussion will be a referral to a radiation oncologist.

Between now and then, I’ll do my best to simply forget about it all. Wish me luck!

Day 2,663 – Research Induced Stress

Finally! I’m so glad this past week is over. It was emotionally one of the roughest weeks I’ve had in a long time.

It all started last weekend, which was a three day holiday weekend for those of us here in the U.S. Because I want to be as prepared as possible going into my April appointment with my doctor, I spent two of the three days continuing to research all sorts of things that will help me have a better informed discussion.

I posted a question in an online support group under the heading, “Recurrent Prostate Cancer and Salvage Radiation Therapy.” What followed were some very thoughtful sharing of stories from other patients who had been down that path already. But there was also a very robust discussion between a retired physician, himself a prostate cancer patient, and a long-time prostate cancer patient advocate. Both had some great insights—sometimes conflicting—and both connected me to other resources.

I’ll spare the full-blown details, but what stressed me out last weekend—and lasted well into the week—was the notion that, despite the plethora of information out there about recurrent prostate cancer and treatment options, too much of it is conflicting or inconclusive, and there’s no clear answer for me.

When you know that you’re going to have to make a decision that could impact the length of your life and the quality of your time remaining, not having clear choices is a problem. And once you choose your path, there may be no going back. You may have to live with permanent, life-altering side effects as a result of that choice. The risks may be low, but they’re real.

Cancer, treatment options, side effects, and imaging technologies were pretty much all that I thought about all week long, and it took its toll emotionally and physically. I couldn’t shake the thoughts from my head, no matter how hard I tried. In my role as a volunteer manager, I really needed to be as upbeat and positive as I can. I tried my best last week, but it was exhausting doing so.

I know that much of this stress is self-inflicted. If I’d just step away from Google and stop researching, then this may not be so bad. But that’s not how I’m wired. I will say, however, if my doctor’s appointment was tomorrow, I’d feel pretty comfortable going into it with the knowledge that I’ve amassed so far.

I also know that there are no guarantees no matter which path I choose. I just want to choose wisely.

 

Month 87 – Adapting and Researching

Ever since my December meeting with my doctor to review the latest uptick in my PSA reading to 0.10 ng/ml where he told me I need to begin to think about salvage radiation therapy, it’s as though the clock has been turned back to when I was first diagnosed. That makes this all very real once again. We’re getting closer to having to make a decision to move from monitoring to action.

My emotions have been all over the place—from mad as hell at the world to ready to bawl at the drop of a hat—and I felt compelled to research as much as I could, as fast as I could even though my next PSA and doctor’s appointments aren’t until April. On the good news front, the peaks and valleys on the emotional roller coaster have diminished some over the last two months. They’re still there, but not as bad as they initially were.

IMG_4828
San Diego at Night

I’ve been spending a good amount of time (perhaps too much) researching and hanging out in the advanced prostate cancer section of various online support groups. That’s been both helpful and a tad frightening. It’s been helpful because I’m new(er) to the advanced prostate cancer discussion, and I’ve been learning more about the different treatment options, protocols, and latest research. It’s been frightening because reading the first-hand stories—while valuable and necessary—has stoked my fears of the treatment side effects.

I did come across one thing in my research that I’ll definitely discuss with my doctor in April.

We know biochemical recurrence after prostatectomy has been widely defined at 0.2 ng/ml for quite some time, yet more and more research is indicating that salvage therapy should begin early in order to have the best chance of success. Some suggest starting SRT before hitting the 0.2 ng/ml threshold.

Of course, as we all know in the field of prostate cancer, nothing is clear-cut. You can easily find research that has conflicting recommendations.

I came across Stephen J. Freedland’s 2005 study (co-authored by Alan Partin and Patrick Walsh—heavy hitters in the prostate cancer world from Johns Hopkins) that shows I may not have to do anything other than continue to be monitored given my status (PSA = 7, PSADT > 15 months, time to recurrence > 3 years). In fact, he writes:

“It is amazing to me that for a man who has all the low-risk features – if his PSA doubling time is greater than 15 months, his Gleason score is below 8, his PSA comes back after three years – his odds of being alive 15 years later are 94 percent.” These men do not need treatment, he adds. “If we know that 94 percent of these men are alive and well 15 years after surgery with no further treatment, anything we do to treat them is unlikely to improve on that, and probably would only affect the quality of life.”

That’s quite encouraging for someone fearful of side effects and loss of quality of life. Combine that with the Pound study done in 1999 that said it takes on average eight years to metastasis after BCR and, on average, another five years to death after metastasis without any additional treatment, and you’re building a stronger case for doing nothing other than continued monitoring for those of us who are averse to treatment side effects. At least in my mind at the moment.

You can read an abbreviated summary of the Freedland study in the Johns Hopkins newsletter, Prostate Cancer Discovery, here, and the full study as published in JAMA here.

I’m slowly adapting to this new path that I’m on, and I’ll work to find the right balance to stay away from the online support groups and the Google machine to maintain a sense of sanity. I fear, however, that controlling the emotional roller coaster is going to be far more challenging from this point forward (steer clear or pass the tissues). Just a hunch.


One related footnote. I’ve not yet met with a radiation oncologist since my PSA started going up in September 2015. If it stays the same or goes up again in April, I’ll ask the urologist for the referral just to start the conversation and learn more from his/her perspective.

Three Weeks

It was an emotionally draining day at work today.

We provide support to patients and their families at a local hospital, and a case worker came to our office looking for activities for a patient in his early twenties and his parents to do over the weekend. Normally, that’s a common request. However, the case worker explained that the patient had only a few weeks left on this planet, and the doctor was urging him and his parents to get out of the hospital and do something—anything—with their remaining time together.

I was crushed.

I’m pretty good about compartmentalizing patient stories and not letting them affect me too much. Not this time. It hit too close to home, at least conceptually. Of course, the young age of the patient added to my reaction as well.

If your doctor told you to go out and make the most of your last three weeks on Earth, what would you do?

Talk about a reality check on your own mortality.

N.E.D. versus Cancer-free

My current predicament of a post-surgery increasing PSA has me reflecting on terminology that I see used in discussions about prostate cancer, and some of it has been downright annoying to me. (Perhaps it’s annoying because I’m now 60 and can claim official curmudgeon status.)

But, if I’m being honest, I’m probably more annoyed with myself than with anyone else.

Dry lake bed at Fossil Falls

All of it centers around the use of the phrase cancer-free.

I see the “newbies” coming out of their first post-surgery PSA test jubilantly declaring themselves to be cancer-free with their first undetectable reading, as well as with any subsequent readings. Don’t get me wrong: It is something to celebrate. Hell, I did it. I declared myself to be cancer-free multiple times, well after my surgery.

But now, facing recurrence, every time I see someone declaring themselves cancer-free, I bite my lip and say to myself, “Just wait five or seven or ten years and see if you can still say that, Buck-o.”

“Bitter. Table for one. Bitter.”

Fortunately, my surgeon was very clear in telling me before the surgery what the chances of recurrence would be. He was managing my expectations with a dose of reality. However, one thing he didn’t introduce me to was the phrase, no evidence of disease.

No Evidence of Disease (NED) should be much more widely used to keep us all grounded in the possibility that, no matter how successful our first-line treatment appears to have been, there’s always that possibility of recurrence. “Cured” and “cancer-free” both give a false sense of security that none of us can count on.

So to those coming out of your prostatectomies, please declare that there’s no evidence of disease on your undetectable PSAs, and hope that you can continue to do that for the rest of your life. In doing so—in managing those expectations—you may be better prepared for that fateful day 54 months after your surgery when there’s now, in fact, evidence of disease. You’ll still say, “Crap!” (or some other string of colorful expletives that would make a sailor blush), but making the leap from NED to recurrence may be just a tad easier than from cancer-free to recurrence.


You can tell from my last few posts that I’m getting back into my writing for therapy mode (or, as a friend calls it, “verbal vomiting”). It is therapeutic for me to have an outlet for some of these thoughts; I can spew them and, once they’re out, put them behind me.

Thanks for putting up with them!