Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
Sharing my prostate cancer experience since November 2010
Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
Is it just me, or is anyone else having pandemic days all blend together and you lose track of time? Late last night (technically very early this morning as I was tossing and turning in bed around 2 a.m.), I realized, “Crap! I didn’t even think about posting on my blog, let alone write anything!”
So here I am on my advertised posting day with three hours and one minute left to get this out on the 11th, and I pretty much have nothing. Well, that’s not entirely true…
I did come across this article on The “New” Prostate Cancer Infolink that talks about PSA doubling times with respect to prostate cancer progression in men with non-metastatic castration resistant prostate cancer.
PSA doubling time and prognosis for men with nmCRPC
Unfortunately, they weren’t able to access the full study report, and the summary that’s provided is pretty high-level, restating the obvious: Shorter PSADT is associated with shorter metastasis-free survival and shorter overall survival.
One of the things that I discovered working in a hospital is that I can sometimes access research reports like this via its computer network. I’ll see if I can access this report to learn more details about the study and, if I can, I’ll share anything I learn.
Whew! Finished with time to spare. 🙂
Stay well and keep living the pandemic life as best and as safely you can wherever you happen to be.
My last PSA test on 4 February showed a 50% drop in my value compared to the previous test in September 2019, which is a major, unexplained swing considering that I haven’t been doing treatments of any type to lower my PSA. It just didn’t sit right with me, so I asked for a retest.
I went in on 20 February for the retest, and the PSA came back at 0.16 ng/ml, exactly where it was in September 2019. (At least that’s the silver lining in the cloud: it didn’t go even higher.)
We’ll probably never get a good explanation for the dip in my PSA earlier this month, and I guess that’s just part of dealing with this beast. I’m going to leave the errant data point on my chart just to show how wacky this can be at times.
The one thing that this has done, though, is drive my PSA Doubling Time down to 39.7 months according to the Memorial Sloan-Kettering PSADT Calculator (excluding the 0.08 reading). That’s still a very good number, but it’s downward trend over time is becoming more concerning.
I’m really glad that I was able to get the retest done before my appointment with the doctor on Tuesday. It certainly will make for an interesting discussion.
More to come…
I jumped the gun and got my PSA test done about a week earlier than I planned. I had a appointment scheduled on Monday to follow-up on my thumb surgery back in February , and I thought I would kill two birds with one stone and get the blood drawn after my appointment.
About 9:00 a.m., the doctor that I had my 1:30 p.m. appointment with called to check in and see how I was doing and if I really needed to come in. “How’s your thumb?” “Still attached and working,” I replied. After a brief discussion in more detail, we mutually agreed that there was no need for me to come into the office.
That kind of put a damper on my getting two birds with one stone, but I decided that I would go to the lab anyway, as I had already planned the afternoon off. It just made sense.
I wish I hadn’t.
My PSA took a considerable jump up to 0.16 ng/ml. I wasn’t expecting that.
The trend function on my spiffy spreadsheet thought it would come in around 0.137 ng/ml so that’s kind of where I had prepared myself to be mentally.
I used the Memorial Sloan Kettering PSA Doubling Time calculator to recalculate my PSA doubling time (it uses values of only 0.10 ng/ml and above), and my PSADT dropped from 155.6 months to 43.1 months. Still a respectable number, but definitely moving in the wrong direction.
Needless to say, this sucks.
My appointment with the urologist is on 22 October and we’ll definitely talk about imaging possibilities and ask for another referral back to a radiation oncologist to discuss salvage radiation therapy.
I came across this article in one of my feeds. There isn’t an “Ah-ha!” moment in it, but it’s good to see research confirming what many have known with data.
A new paper in Clinical Genitourinary Cancer has provided us with some more detailed information about risk for metastasis in men with recurrent prostate cancer after first-line surgery.
via Projecting risk for metastasis after radical prostatectomy — THE “NEW” PROSTATE CANCER INFOLINK
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).
P.S. Sorry for the tardiness of this post. I was out playing. 🙂
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 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.
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.
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.
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!
March 21, 2019 at 5:09 am