While 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.
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.
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?
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.
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.
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.
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.”
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.
But 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.
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.