Month 103 – Regaining Focus

Last month I talked about turning a corner in my outlook on my current situation, and boy, I must have fish-tailed around that corner—fast—because cancer has been the furthest thing from my mind pretty much the entire month. Work had a lot to do with that, too.

I’m the volunteer manager for a nonprofit, and we had one weekend last month with five events going on all on the same day at five different locations, and I had to provide 160 volunteers in one day to cover them all. Plus, we had three other events later in the month that needed another 80 volunteers between them. Needless to say, my attention was on getting each of those events fully staffed, and thoughts of cancer fell by the wayside. That’s good.

One unintended side effect from all this is that I really haven’t been keeping up on the advances in the imaging technologies and latest research on treatment of recurrent prostate cancer like I once did. It’s actually been a refreshing break, but I want to get back into researching again so that I have the most current information available when I go for my next PSA test in October.

The cool thing this time around, though, is that I’ll be doing this research from the perspective of educating myself at a leisurely pace rather than one of  being constantly glued to cancer websites in sheer panic because my PSA was rising. That’s turning a corner.


My next post on 4 July 2019 should be a little more substantial. It will be my semi-annual Life After Radical Prostatectomy: 102 Months Later post with more detailed updates about how I’m doing eight and a half years after the surgery.

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 2,960 – Meeting with the Urologist

One thing that I’ve learned along this journey is that every doctor has his or her own take on the situation and what should be done, and very few of those opinions match. They can’t even agree on standard definitions.

This afternoon’s meeting with yet another urologist proved to be interesting at best and a tad frustrating at worst.

He was a younger doctor but the interesting thing was that he held to the belief that I haven’t had a biochemical recurrence yet and won’t until I hit the magical 0.2 ng/ml. I was a bit taken aback by that given what everyone else has been telling me for the last two years. He also talked about the newer ultra-sensitive PSA tests, but hung on to the definition that anything less than 0.1 ng/ml was “undetectable.” In his mind, my PSA at 0.13 was “very low.”

We talked at length about my PSA doubling time, and that was one area that we came to consensus on. That having a PSADT of more than two years was a good thing. He seemed quite interested in seeing the results of the Memorial Sloan Kettering PSADT calculator, which had my doubling time at 35 months (based on only four data points because their calculator accepts only those values >= 0.1 ng/ml). (I also had my PSA tracking chart printed out and sitting on his desk when he walked in.)

I asked him about what his experience was with dealing with the long-term side effects of salvage radiation therapy as a urologist—how frequently they occurred and what severity they were. He went through the list of things that I had already known, and said in his “whole career” he had seen only three or four cases that were significant. (Note: His “whole career” spanned all of six years. I’ve had cancer 8 years.)

Lastly, we talked about the Ga68 PSMA imaging trial going on at UCLA. It was clear he was aware of the research, but wasn’t at all familiar with the details or requirements of the trial. I didn’t expect him to be well-versed on the topic, but it was clear that I knew a bit more about it than he did, especially when it came to the requirements to participate, (I didn’t tell him that I had actually contacted UCLA.)

He did ask me if I had a PSA threshold in mind where I would want to take action when it comes to salvage radiation therapy. In my mind, if we get into the 0.15 or above range and the PSADT starts to shorten, I’ll have to strongly consider the next steps. But I did bring up the Freedland study that shows, with my numbers, I can do nothing and have a 94% chance of being around in 15 years.

Normally, I don’t mind seeing younger doctors because sometimes they’re more familiar with the latest research and current treatment philosophies than their older counterparts. I’ll take his input with a grain of salt considering how he’s not in line with the thinking of some of the others that I’ve seen in the last year or two.

In the end, we agreed to kick the can down the road and do another PSA test in four months in April 2019.

I’m still interested in speaking with a radiation oncologist about this again. I may try emailing the one I saw in May or just ask for another referral after the beginning of the new year.

It was a bit of an odd consult. I’ll just forge my own path forward and we’ll see where that leads. In the meantime….

Wishing you all a very Merry Christmas and the healthiest, happiest New Year possible!

—Dan

IMG_20171207_140153690
We have to improvise here in San Diego!

A review of PET Imaging for Recurrent Prostate Cancer

This is a quite informative paper from Practical Radiation Oncology, giving a good overview of the newer imaging technologies being developed to identify the location of recurrent prostate cancer before beginning salvage radiation therapy.

Prostate cancer–specific PET radiotracers: A review on the clinical utility in recurrent disease

I’ll comment in a separate post on where my head is at after receiving my latest PSA results.

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.