Month 102 – Turning a Corner?

Normally, there’s a relatively short half-life of feeling good after returning from a vacation. The mountain of work emails and unpaid bills that accumulated while you’re gone just suck the vacation memories and relaxed feelings out of you quite rapidly as you get back into the daily grind.

That’s held pretty true for me after last month’s trip to Switzerland, with two exceptions that, if I can keep the momentum going, make me feel as though I’m turning a corner.

For those of us who have introduced the word “cancer” into our vocabulary, we know that thoughts of cancer are always nearby. Some days we’re better at suppressing them than others. But when the notion of recurrence hits, the thoughts become more prevalent, more intense, and more psychologically draining over time. At least that’s what happened to me.

But since my vacation and since my visit with the urologist last month, I’ve begun to turn a corner in my thinking about my recurrence. In a nutshell, given my numbers (current PSA level and extraordinarily long PSA doubling time), my thoughts are finally shifting from panic to calm concern.

In some of the more recent literature about prostate cancer, you hear more and more people talking about treating some cases of prostate cancer as more of a chronic illness instead of an aggressive disease. For now, I’m happy to—rightly or wrongly—lump myself into the “manage it as a chronic illness” category. It certainly has helped relieve some of the stressful thoughts about recurrence and the potential side effects of salvage radiation therapy or hormone therapy. Of course, if my PSA shoots up again in October, that may change my approach to all of this yet again.

This approach certainly isn’t for everyone. I feel blessed to have a PSA doubling time of 155 months, but even so, I still recognize there’s an element of Russian roulette in my decision to continue to monitor for now. I’m okay with that.

The second exception to my vacation not wearing off within a week has been with my photography.

Spending ten days wandering around Switzerland with my camera (the first time I’ve flown with most of my gear) reinvigorated my interest in getting out and photographing even more, and that’s been therapeutic for me as well. When I’m looking through the lens and—excuse the pun—focusing on what’s in front of me, I’m not thinking about cancer. At. all.

I’ve been out with my camera every weekend and even a few week nights since coming back, and I hope I can keep the momentum going through the summer. I feel better, plus practice makes perfect. (Although there’s no such thing as a “perfect” photograph.)

In the end, I’m glad that I pushed myself to go on the trip. Perhaps the half-life of this vacation will be as long as my PSA doubling time (or longer).

—Dan

P.S. Sorry for the tardiness of this post. I was out playing. 🙂

Day 3,081 – PSA Discussion with Doctor

IMG_20190418_134348455While waiting for my appointment with the doctor this afternoon, I got caught up on reading about the new Datsun 280ZX in the waiting room in the May 1981 edition of Road & Track magazine. Seriously. That thing belonged in the National Archives, not the doctor’s waiting room. Needless to say, it was a fun trip down memory lane, as I had just graduated from college three months earlier and was driving my 1974 Ford Galaxie 500 (my first car).

The discussion with the doctor went about as expected. In a nutshell: Continue to monitor; no action needed at this point given my PSA level and my PSA doubling time of 155 months. (Calculated using the Memorial Sloan-Kettering PSADT nomogram.)

She told me something new, too, concerning the explanation for some of the very minor fluctuations in PSA levels. I knew that physical activity and having orgasms before a blood draw could impact your PSA level, but she said that even variations in your hydration level can cause minor variations in your PSA readings. Interesting.

Just for grins and giggles, I asked her the $64,000 question: How do you define biochemical recurrence?

There was quite a long pregnant pause before she responded, “That’s a difficult question to answer.” She explained the that it’s been defined many ways and, while she never did answer my question directly, my impression was that she was in the “two or more consecutive increases in your PSA level” camp.

One thing the doctor said, too, was that she has seen cases where patients PSAs start increasing and then plateau and sit there for years without much change at all and no need for intervention.

She also suggested that, given where my PSA level was and how slowly it was moving, that we could retest in six months instead of sticking to the four month schedule that I’ve been using for the last three and a half years. I agreed. I return on 22 October 2019.

Again, the meeting went pretty much as I expected it would, and I’m okay with what we discussed.


I had a great trip to Switzerland in the first half of the month despite some dodgy weather (which is to be expected in northern climates in April). If you’re interested in reading about it (or at least just looking at some photos), you can check it out on my other blog, Travelin’ Dan.

Month 101 – Homeward Bound

This will be a short post, as I’m hammering this out on my tablet somewhere between Zürich, Switzerland and San Diego.

In December, Delta Airlines was having a 24-hour sale on its Delta One service to Europe, and I jumped on the opportunity. I landed a round-trip ticket for 128,000 frequent flyer miles and $93 USD in taxes, fees, and travel insurance. Sweet! The only catch was that I had to travel between February and early May.

When I went into planning this trip, it was a “What if I have to have radiation and this might be the last big trip I can take?” kind of thought running through my head. It was a bucket list trip of sorts. But then my PSA results came back and it became more of a celebratory trip.

I’ll work on my detailed post for my travel blog, Travelin’ Dan, once I recover from the trip and a 9-hour difference in time, and review a few hundred photos and process only the best. In a nutshell, though, I visited Luzern, Interlaken, Bern, and Fiesch. The photo for this post (above) was taken from the Schilthorn and shows (from left to right) the Eiger, Mõnch, and Jungfrau mountains.

For fun, here’s a cell phone photo of the Aletsch Glacier on the south side of the Eiger, Mönch, and Jungfrau, at 23 km / 14 miles, the longest in the Alps. One person told me they had about a meter of fresh snow a week earlier. (It snowed while I was in Luzern.)

And a back-to-reality reminder: I talk to the doctor on the 18th about my most recent PSA results.

Day 3,060 – PSA Results: WTF?!?

Okay. Sorry to use the vernacular, but what the f*ck?!? My PSA went down from 0.13 ng/ml to 0.10 ng/ml!

Not that I’m complaining, mind you. But, seriously, WTF?

This is great news, but when you get yourself psyched up for yet another increase (after 3.5 years of pretty steady increases), it certainly plays games with your mind when the number goes in the opposite direction in a substantial way. Did I ever mention that I hate this disease?

I can’t wait to hear what the urologist has to say about this on 18 April. It should be entertaining.

So that’s that. Go figure.

PSA 20190326

Dr. Daniel George on PSA Recurrence

This article discussing PSA recurrence showed up in my reader about the same time that I went for my PSA test, so it was pretty timely.

I’m not a subscriber to Protastatepedia, so I can’t see the full articles that they post.

https://wp.me/p4yQj7-zm

One of the things that Dr. George talks about is the PSA doubling time as an indicator to aggressiveness. Using the Memorial Sloan Kettering Cancer Center PSADT calculator, my doubling time was 35 months before this week’s reading; now it’s at 155 months.

Yes, that last reading is most likely and anomaly skewing the results. Or perhaps the 0.13 reading was the anomaly and I’ve been holding steady at the 0.10-0.11 range for a while. The next test will tell.

I like the idea of treating this as more of a chronic illness than something to go after aggressively given my numbers. We’ll have that discussion with the doctor on 18 April.


Getting on my soapbox for a second…

Prostatepedia certainly doesn’t seem to want to engage their readers. I left a comment on their blog and, when it wasn’t even moderated let alone answered, I left the same comment on their Facebook page. It’s now gone.

If you’re not going to acknowledge reader comments, Prostatepedia, why bother giving us the option to do comment in the first place?

Here’s what I wrote:

Thank you for a good overview of biochemical recurrence, but there’s one thing that you’ve omitted from the article: how biochemical recurrence is defined.

I know that for years, BCR after a radical prostatectomy was defined as hitting a PSA level of 0.2 ng/ml. But with the advent of the ultra sensitive PSA test, I’ve seen some suggest that BCR occurs with a PSA as low as 0.03 ng/ml. Others define it as three consecutive increases in PSA regardless of the value. Not having a clear and widely accepted definition is infuriating to those of us with an increasing PSA.

Cookson, et al., did a review of published articles on the topic of BCR (J Urol. 2007 Feb;177(2):540-5.). They reviewed 145 articles and found 53 different definitions of BCR. Needless to say, from a patient’s perspective, that just boggles the mind.

https://www.ncbi.nlm.nih.gov/pubmed/17222629/

I had a radical prostatectomy in January 2011, and had undetectable PSAs for 54 months when it became detectable at 0.05 ng/ml in September 2015. We’ve been testing every four months ever since, and my most recent PSA in December was 0.13 ng/ml. Using the MSK PSADT calculator, my PSADT is around 32 months.

Last May, I saw a radiation oncologist for the first time when my PSA was at 0.11 ng/ml, and he recommended starting salvage radiation therapy right away. Given my slow PSADT, I opted to continue to monitor. When I saw the urologist in December, he said that I haven’t even hit BCR yet because I hadn’t hit 0.2 ng/ml.

So on the one hand, I have one professional telling me that I have recurrence and the earlier we start SRT, the better the outcome chances are and, on the other hand, I have another professional telling me that I don’t even have recurrence yet. Frustrating.

I’m not asking for medical advice on what I should do, but I do believe that ANY discussion about biochemical recurrence includes how recurrence is defined and/or how the definition is evolving.

Your comment is awaiting moderation.

Day 3,058 – A Date with Dracula

My local friendly phlebotomist, aka Dracula, just sucked a vial of blood from my arm for the next PSA test. I should have the results online by Friday.

I was impressed. In and out of the clinic in less than ten minutes. Not bad at all.

Here’s where we were the last time around just as a refresher:

PSA 20181203 clean

Day 2,948 – PSA Results

My slight sense of optimism that I gained after my last consistent PSA result was shattered at four o’clock this morning when I hopped online in a fit of insomnia to check my PSA test results from this week. I’m back on the upward climb again with a PSA of 0.13 ng/ml.

PSA 20181203 clean

My spiffy spreadsheet predicted a value of 0.129 ng/ml, so it wasn’t unexpected. Just my hope for a more stable PSA went out the window.

Obviously, I’ve got some serious thinking to do in the weeks ahead.

The predictive part of my spreadsheet shows the increase will continue at a rate of about 0.011 ng/ml every four months. In April, I would be at 0.140 and in August at 0.151. Is that rate slow enough to delay any decision about salvage radiation therapy a while longer? I don’t know.

Do I get involved with the imaging trial at UCLA to see if we can determine where the cancer is before undergoing salvage radiation therapy? I don’t know.

Or do I just say screw it and start the salvage radiation therapy in early 2019? I don’t know.

Stay tuned for the answers. That, or for pictures of ostriches with their heads buried in the sand.

Day 2,841 – A Chat with the Urologist

I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.

This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.

I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.

I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.

I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.

He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.

One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)

That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)

We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.

Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.

All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.

Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.

So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.

Time will tell.

Month 93 – Questioning Recommendation

Regular readers of my blog know that I tend to overthink things. Big time.

I’ve had a few days to think about what the radiation oncologist said in his email—about continued monitoring being a very reasonable approach—and I began to question that bit of advice. Not necessarily its validity, but more along the lines of why the change of heart with the doctor?

When we had our consult in May, there was no doubt that his recommendation was to start salvage radiation therapy right away. He presented a pretty strong argument that early treatment is better than delaying. My numbers now are the same as when he gave his “treat now” recommendation, so why the sudden change to “okay to monitor”? Is he just appeasing me, telling me what he thinks I want to hear? Or does this one data point of a stable PSA really justify changing a treatment recommendation?

Don’t fret. As I said, I overthink things.

I’m perfectly content with the “continue to monitor” approach for the foreseeable future. I really don’t question the integrity of the radiation oncologist either. Even if he was appeasing me, part of being a good doctor is listening to the patient’s concerns and understanding that the patient’s perspective needs to be at forefront of any treatment decision. I only met with the doctor once, but given his take-charge personality, I’m confident that he would have argued more forcefully if he truly thought I needed radiation therapy right away.

I’ve put aside my little bout of cynicism and will focus on enjoying the next four months.

Speaking of four months, that’s the other little cloud that rained on my post-PSA parade. “Crap. I’m back in PSA limbo land yet again.” Mentally, I had prepared myself for the PSA to have gone up again and that I would be one step closer to making the zap or not to zap decision. It’s still emotionally draining even after almost eight years of dealing with this. Oh well. Suck it up, buttercup.


On a fun note, I was toying with the idea of driving out to the 96° F / 36° C desert tonight to try and capture the Perseid meteor shower with my camera (I’m writing this on Friday night). But after three hours in the dentist’s chair this afternoon, that ain’t gonna happen. I’m zonked. Perhaps Saturday night.

Here’s what I captured after an hour and a half of standing alone in the desert last year. A near-full moon was rising and illuminating the mountains, but it was beginning to be too bright to see meteors.

Perseid in ABDSP

 

 

Day 2,827 – Q&A with the Radiation Oncologist

Just a quick update…

I shared my last PSA results with my radiation oncologist via email yesterday to see if the results would influence his treatment recommendation.

He stated that a stable PSA is “great news” and that “continuing to monitor at this point is a very reasonable approach.” I also asked if a four-month PSA test frequency was appropriate or if we should look at increasing the frequency. With my numbers, he said that a three to six month frequency was most common, so sticking to four months was fine.

I also asked for clarification about sexual function after salvage radiation therapy. For some reason, I had it in my mind that from our conversation during the initial consult, he said that zapping me would likely damage my one remaining nerve bundle to the point that sexual function would be a thing of the past. He corrected me.

He said that post-radiation function is highly dependent on pre-radiation function. There will likely be some degradation, but not necessarily a complete loss of function as I had somehow lodged in my brain.

He closed the conversation by saying, “Hopefully your PSA will continue to behave itself and we can worry about that [sexual function] down the road.”

Needless to say, I was quite pleased with those responses.

We’ll see what the urologist says on the 21st (I put the wrong date in my last post) but, for now, I’m fine with doing nothing until my next PSA test in December.