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

Month 100 – The Language of Cancer

It’s interesting how much media coverage there is when a celebrity announces his or her cancer diagnosis. Last week, Alex Trebek, host of the syndicated game show, Jeopardy, announced that he had been diagnosed with Stage 4 pancreatic cancer. In his announcement, he was quite optimistic that he was going to “fight” this and “win.”

Mr. Trebek’s use of those words led to an article in the Chicago Tribune by Heidi Stevens, With Alex Trebek’s announcement comes unease over the words ‘fight’ and ‘win’ applied to cancer. It’s an interesting take on the topic and one that resulted in quite the debate on social media.

The subject of the article, Sheila Quirke—who lost both of her parents and four-year old daughter to cancer—put things in simplistic terms. She suggested that some people turn the discussion into a binary choice—you’re either a winner or a loser—and that, by dying from cancer, there’s an unspoken implication that the patient is a loser.

I can’t say that I’ve heard anyone imply that someone who has died from cancer is a loser. Ever.

I never liked using the language of “battling” or “fighting” cancer because, as Ms. Quirke said, it can be overly optimistic and implies that we have control. The pragmatic part of me says that we’re merely managing our cancer, reacting to the latest test results. Sure, we can and do have control over our treatment decisions and our attitude but, in the end, it’s the cancer that is always dictating the next chapter, even if our treatments have led to no evidence of disease.

That doesn’t mean that I’m a defeatist. I just don’t like to sugar-coat the facts. It’s simple: I was diagnosed with prostate cancer. I pursued a treatment option. It apparently failed. I’m monitoring my status and evaluating next treatment options. That’s it. No battle, no fight, no war. That’s what works for me.

Given my propensity for travel, perhaps we can replace the war metaphor and language with that of a lifelong road trip.

We start our journey on this planet with a full tank of gas and infinite different route choices on the day that we’re born. Our goal is to make the gas last as long as possible to get us to our destination at the end of our days.

detour-44162_960_720But then cancer comes along and diverts us off of our chosen path. We’re forced into unmapped territory, not certain of how long or how dangerous the detour may be. We educate ourselves as best we can, and we choose different routes along the detour that we think will work best for us. If we’re lucky, we choose a route that gets us back to the main highway safely and conserves as much fuel as possible. (We may need new shock absorbers and an alignment because of the bumps along the way, however.)

If we do make it back to the main highway and are enjoying the scenery on cruise control, Cancer can throw another detour miles down the highway, sending you down Recurrence Road. Again, we educate ourselves and select the best route that we think will get us back to the main highway as quickly and efficiently as possible (and hope the repair bills this time aren’t as expensive as the last detour).

We try to be the best navigators possible, conserving as much fuel as we can for the full journey. But we don’t control the length of the detour route, Cancer does. For some, that detour may be only a mile out of the way; for others, the detour may be 100 miles out of the way. That means that some will run out of gas ending their journey sooner than others.

One wasn’t a better navigator than the other. It’s not a failure. It’s not a loss. It’s just our reality.

But each cancer patient’s way of dealing with this disease is different and, if saying that you’re battling cancer and you’re going to win works for you, by all means embrace it and shout it from the rooftops.

Language about cancer means different things to different people, and I do agree with the premise that we need to be aware of and sensitive to that fact when we choose our words with cancer patients. My heart goes out to Ms. Quirke for her losses.


We’re coming up on my next PSA test in a few weeks. My schedule may have me going a week earlier than I would have otherwise gone, but that should be no big deal. (Yes, I’m OCD enough to try to keep the spacing between my four-month test cycles within a day or two of each other to facilitate calculating PSA doubling time.) I’ll probably go early in the last week of March, assuming my wacky work schedule that week permits me to do so. My PSA tracking spreadsheet is predicting a value of 0.14, up from 0.13 the last time. Wagers, anyone?

I will say that, throughout the week since learning of our fellow blogger, Jim’s, death last weekend, I’ve been pretty reflective on how I’ve been approaching my own increasing PSA. I don’t know that I have any answers, and the PSA test results at the end of the month will certainly bring the topic to the fore once again.

Marking a Passing

It’s funny in a world of 7+ billion people how a common theme can bring a small group of us together through blogs. Unfortunately, in our case, it’s prostate cancer that has united us.

Not long after I started this blog, a gentleman named Phil from Montreal, Canada (at the time) and I started corresponding, comparing notes as we do.  We met in person when he wintered over in Palm Springs, just a few hours from my house; and he spent a few days visiting with me on a subsequent trip to San Diego.

Phil had also befriended Jim, the author of the blog, Rant from the Suburbs. I’ve been following Jim’s story for quite some time as well. Phil and Jim formed a strong connection, communicating with each other daily for years according to Phil.

Sunday morning, I received the following email from Phil:

My friend, Jim, in England passed away yesterday. The cancer just overwhelmed him in the last few weeks.

I never met Jim beyond liking or commenting on each other’s posts, but the news hit me harder than I expected it would.

I was reluctant to post this because I didn’t feel it was my place to do so, but Phil encouraged me to share it with those in our little blogging community. He wasn’t sure that Jim’s family would post anything on his blog, so you may not have learned of his passing if your only connection to him was through his blog.

From half a world away, it was obvious that Jim handled his disease and treatment with strength, grace, and a sense of humor.

He will be missed by many.

 

Month 99 – Stubbornness, Independence, and Relationships

My mother was fiercely independent right up to the final weeks of her life. Or at least she wanted to remain as independent as she could for as long as she could, and she generally succeeded in that.

Let’s say that this apple didn’t fall far from that tree.

IMG_20190204_195859215 (1)Last week I had a cyst removed from my right thumb (I’m right-handed). It started out quite small over a year ago and had grown to the size of a small pea just below my thumbnail. It wasn’t painful, but it was beginning to change how my thumbnail grew and, because it was sticking out from the surface of my thumb, it would get abraded if I rubbed it against things. It was time to go.

I drove myself to the hospital with the understanding that this would likely be done with a local anesthesia, but I needed to be prepared in case they needed to give me stronger happy juice during the procedure. Let’s just say that the hospital over-achieved and knocked me out for the surgery.

Thanks to the nerve blockers used in my arm, my hand was flopping around like a dead fish, completely uncontrollable and completely useless. (Much like in this classic Tim Conway / Harvey Korman sketch.) When it came time to go home, I had to have the nurse button my shirt and tie my shoes so I could leave the hospital. So much for independence.

Of course, that meant that I couldn’t drive myself home. Thankfully, I had given two friends a head’s up that I may need a ride and had each of them on standby waiting for a call from me. Tom was gracious enough to chauffeur me home during a rainy rush hour in San Diego. (San Diegans lose their minds when it comes to driving in the rain because it happens so infrequently, so I really appreciate his navigating through that mess.)

The next morning with full control of my hand and minimal pain from the incision, I had to retrieve my car from the hospital’s parking garage 31 miles / 50 km from my house. Being stubborn and wanting to regain some independence, I took three buses and two trolleys (light rail) and two hours and forty minutes to get to the hospital. But I got my car on my own. Woo-hoo! (Although it’s been almost a week and I still haven’t untied the nurse’s knots on my shoes—I’ve been slipping my feet in and out of them all week long.)

Some of you may recall that several posts ago, I talked about relationships and how disillusioned I was with some of them. Some reflection since that post and this incident have recalibrated me to a degree.

Facing any illness in general or cancer in particular as a single person poses its own set of unique challenges. Obviously, I have to impose on the lives of those around me to meet some of my needs if I can’t do things for myself. I hate having to do that (stubborn independent streak) but obviously know that it’s okay to swallow my pride and do so when the time comes.

This incident highlighted for me the handful of people that I would feel comfortable approaching for assistance, and that’s a good thing.  (Keep in mind that my family is half a continent away in Chicago, so something major would have to happen for them to be of assistance. Either I go there or one of them comes to San Diego.)

I would like that list of potential helpers to be a bit longer just to spread the burden among the lot of them, and that’s where some of my questions about current relationships still come into play. Relationships that were fostered over decades before I joined social media (i.e., Facebook), seem to have been reduced to mere “likes” and 🙂 now from people who used to call, email, or visit. Will I be able to call on them and rely on them if and when the need arises? In most cases, I should be able to count on them, but time will tell.

With luck, any need for physical assistance will be years away and I’ll have time to sort things out. In the meantime, I won’t burn any bridges and will work to ensure that I’m holding up my end of the relationship.

 

Day 3,000!

Wow! Regular readers of this blog know that I’m a numbers guy and like tracking milestones and PSA.

Little did I think when I started this blog over eight years ago that I would still be writing about prostate cancer 3,000 days later. Of course, I was hoping that I’d have been “cured” by now, but that just wasn’t in my cards. Oh well.

So the good news is that, after 3,000 days, I’m still here and still blogging (a reason to celebrate). The less good news is that, after 3,000 days, I’m still here and still blogging, but now about recurrent cancer. #CancerSucks

Thanks to everyone who’s followed along for some or all of this journey, and who have offered insights, resources, and support along the way!  —Dan

Life After Radical Prostatectomy: 96 Months Later

So it’s been 96 months since my radical prostatectomy on 4 January 2011. How am I doing?

Status

My PSA resumed its upward climb last month after a brief hiatus between April and August. It certainly wasn’t unexpected, yet I was holding out hope that I could have had three consecutive PSA readings at the same level. It just wasn’t meant to be. That means that I’m one step closer to having to make a decision about what’s next.

Emotions

At this point, I’m at peace with where I’m at regarding the cancer returning. What’s actually been gnawing at me since my last post like this six months ago is something completely different—relationships.

Relationships require effort and commitment by both parties and lately, I’ve been asking myself the question, “At what point does one stop investing in a relationship when you get little or no return?” I don’t know that I have the answer to that question. I don’t want to burn bridges, but time is the most precious thing we as cancer patients have, and we want to invest our time as wisely as possible.

The sad thing is that I’m beginning to ask that question of the people who are the ones that I’ll  need to turn when the cancer advances to the point where I’ll need assistance. (Remember, I’m single and the thought of facing this alone scares the piss out of me.)

Incontinence

Speaking of piss out of me, let’s talk incontinence. (Sorry, I couldn’t resist.) I have noticed a slight increase in stress incontinence episodes and, if I’m perfectly honest with myself, I would attribute that to the fact that I have gained weight again. I really think there’s a correlation there, so I’m going to work on losing some weight and see what happens.

I’m still 90+% dry, but when I sneeze, cough, or lift something of even moderate weight, the likelihood of a few drops leaking out has gone up slightly.

The other time that I have issues is immediately after emptying my bladder. (I don’t know why I haven’t talked about this before, but it’s been an issue for quite a while.) If I don’t go through a little routine at the urinal to “milk” any residual urine from my urethra after emptying my bladder, the chances are good that I may have a squirt of urine as I’m putting everything away.

Sexual Function

My ability to achieve decent erections has remained pretty constant through the last six months. I’m in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Some days I can get lucky and get in the 90% erection stage, but those days aren’t common. Of course, all of that is without any chemical assistance.

Summary

I’ve got a lot on my plate in the months ahead. I’ll continue to research imaging trials and salvage radiation in anticipation of my next PSA test in April. I’ll also evaluate my relationships, looking inward first to see how much of this may be my problem, to see where I should invest my precious time. I have no doubt that 2019 will prove to be an interesting year.

Season’s Greetings from San Diego

I just wanted to wish everyone a Merry Christmas and all the best for 2019 with a few photos and a video that I took on Christmas Eve at the iconic Hotel del Coronado across the bay from San Diego.

You can go ice skating under the palm trees about 100 feet/30 meters from the beach. (I know better than to strap a pair of ice skates onto my feet. No Christmas Eve trip to the hospital emergency room for me!)

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!

Month 97 – Researching and Evaluating What’s Next

Last week’s bump up in my PSA level certainly knocked me from my blissful state of denial back into reality. I was surprised by how emotional I got about the results. On the good side, however, the emotions lasted only a few hours and were pushed aside by the demands of work.

After work, I wrote the study coordinator at UCLA about the gallium 68 (Ga 68) PSMA-11 PET/CT trial. I was pleasantly surprised when I received a reply within 18 hours.

In a nutshell, they’re still accepting participants to be randomized into two arms of the trial. In one arm, they will use the Ga 68 PSMA PET/CT imaging to attempt to detect the cancer in patients about to undergo salvage radiation therapy; the other arm just begins salvage radiation therapy without the benefit of the imaging. Of course, UCLA covers the cost of the imaging for those in the first arm of the trial.

Interestingly, they do have another related trial where the patients “pay around $2,800 USD, but everyone gets the scan and there are no obligations about what treatment patients should do next.” That has tremendous appeal to me, but I did send some follow-up questions on Friday.

Specifically, I wanted to know if they had any preliminary results that showed the rate of a positive scan result with a PSA of 0.13 ng/ml. If you look at the information in my previous post about imaging, you’ll see that the detection rates for a PSA of less than 1.0 ng/ml ran from 29% to 67% (median 51.5%). I suspect that the further one’s PSA is from 1.0 ng/ml, the less likely it is that you’ll detect the cancer cells.

Now I’m not trying to be penny-wise and pound-foolish, but $2,800 is a decent chunk of change to shell out for something that may have very little chance of doing what it’s supposed to given my PSA level. I mean, really—that’s the equivalent of a sweet Gitzo carbon fiber tripod with ball head and a new lens for my landscape photography. 🙂

Of course, I could wait for my PSA to get closer to 1.0 ng/ml, but that’s pretty scary.1 The longer you wait, the more the cancer cells replicate and spread and, by then, it may be too late to just zap the cells in the prostate bed (assuming that’s where they’re still at right now).

Because Ga 68 PSMA PET/CT is not yet approved by the U.S. Food and Drug Administration, I did ask the coordinator if there were any adverse events or side effects that have been identified with the imaging trial so far. That would be nice to know before injecting some unapproved glow-in-the-dark juice into my system.


I’ll get my urologist’s take on all this when I have my next appointment on 18 December. I’ll ask for another referral back to the radiation oncologist but, while that’s happening, I’ll likely email the radiation oncologist that I met with in May and ask for his thoughts on the Ga 68 PSMA trial.

While salvage radiation therapy has certainly moved higher on my list of things to consider, I’m still concerned about the potential long-term side effects impacting daily quality of life as a result. That will definitely factor into my decision-making process.

More to come…

Footnote:

1 – I ran the trend function in my spiffy PSA tracking spreadsheet and, using a linear trend based on my historical increases, it predicts I wouldn’t hit 1.0 ng/ml until December 2045. I’ll be just shy of my 88th birthday—or dead—by then. Perhaps I don’t need to sweat this after all… 🙂 (Yes, I realize that the trend won’t remain linear over time.)