Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.
Today was a tough day. The news of my PSA increasing to 0.21 ng/ml weighed heavily on me throughout the day. It even made me a little snippy in a meeting this morning, as my tolerance for trivial bullsh*t decreased to an all-time low. Oh well. They’ll get over it.
Long-time readers of this blog already know that I’ve delayed starting salvage radiation therapy because I’m reluctant to incur the short- and long-term side effects of radiation without having a higher degree of confidence that we’re actually zapping in the correct location(s)—zapping the cancer itself.
Of course, the current state of imaging for prostate cancer generally sucks, but it is getting better with advances like PSMA PET scans using 68Ga-PSMA-11 where prostate cancer can be located much earlier and much more accurately than using previous technologies such as bone scans. But even 68Ga PSMA PET scans have their limitations.
One of the greatest challenges (gambles?) in deciding when to start salvage radiation therapy is the timing. Most will argue the earlier, the better. Statistics show that in most cases, the cancer is still in the prostate bed or pelvic region, so the radiation oncologists start blindly zapping those regions hoping the statistics are correct. But the cancer could have already spread to more remote locations.
With my PSA doubling time in the 4-5 year range, my team and I have decided to hold off on salvage radiation therapy and, in so doing, I’ve avoided any radiation side effects for five years giving me a high quality of life during that time. That has value to me. Of course, none of us know whether the little buggers have been hanging out in the prostate bed during that time (like statistics would show), or if they’ve gone on one of their own infamous road trips and have started spreading.
One of the things that I’ve been trying to determine for months now is at what PSA level can the Ga68 PSMA PET scan begin to reliably pick up prostate cancer. The answer typically was in the 1.0 to 2.0 range for the PSA. With a PSA a fraction of that (0.21) the PSMA PET scan really wouldn’t be a reliable tool for me yet. It’s not a completely worthless tool, but there are decent chances that I could come away with a false negative result.
Tonight, I stumbled across this paper that provided some insights: Assessment of 68Ga-PSMA-11 PET Accuracy in Localizing Recurrent Prostate Cancer: A Prospective Single-Arm Clinical Trial.
The chart below taken from the paper was exactly what I was looking for and more. First, it shows the number of cases where patients with an increasing PSA after prostatectomy have positive results based on their PSA level. For those with PSAs less than 0.5 ng/ml (me), the number of positive cases was only 38%. In other words, there’s about a one in three chance that the Ga68 PSMA PET will be able to locate the cancer at that PSA level. Not good odds, but better than zero.
To me, the really interesting thing about this chart is that it shows the location of where the PSMA PET scan found the cancer by PSA level.
You can see that more than half of the cancer in patients with PSAs below 0.5 were found either in the prostate bed or pelvic region, both of which should be very treatable with salvage radiation therapy.
However, once the cancer is in other the other regions—extrapelvic nonbone (other organs), bone, or multiple regions—the cancer becomes very difficult if not impossible to treat. At that point, it’s only managed.
Please keep in mind that those are my non-expert opinions that I will have to confirm with my medical team to make sure I’m interpreting things correctly.
You can see that, as your PSA increases above 0.5 ng/ml, the cancer was found more broadly in the study participants. By that, I mean the cancer had spread beyond the prostate bed and pelvic region. You can also see, however, that even with PSAs less than 0.5, the cancer has already spread elsewhere in about 40% of the patients in the study with that PSA level.
That’s the whole point of knowing this. If the cancer has already spread, there’s no sense in zapping the prostate bed or pelvis risking long-term radiation side effects adversely impacting quality of life for no gain whatsoever.
This is only one study with 635 patients, so I am taking the results above with a healthy dose of skepticism, and I’ll continue to do more research in the three weeks before my appointment. But this study will be a good conversation opener for the consultation.
Some of the questions that are on the top of my bald head are:
Fortunately, the US Food and Drug Administration approved the Ga68 PSMA PET scan at the University of California Los Angeles (UCLA), and that would be a 2.5-3 hour drive for me to get up there to have the scan.
In the meantime, I’m going to have to reconcile in my own mind how high I’m going to let my PSA get before taking action, scan or not.
Lots of research, thinking, and soul-searching ahead. But be forewarned: My trivial B.S. tolerance level is way less than my PSA. 🙂
It has always been troubling that only about half of all salvage radiation treatments after failure of radical prostatectomy are successful. Usually, only the prostate bed is treated. But sometimes recurrent patients (or those with persistently elevated PSA) receive salvage radiation to the pelvic lymph nodes as well, or subsequently. Radiation oncologists here in the […]New guidelines for salvage radiation dimensions
One decade. 522 weeks. 3,654 days. 87,696 hours.
That’s how long I’ve been living with prostate cancer since being diagnosed on 11 November 2010. Of course, the operative phrase is “living with.”
The diagnosis was terrifying. The treatment decision was excruciating and exhausting. The surgery recovery was longer than expected with some complications along the way. The long-term side effects have been what were advertised at the beginning.
On the positive side, there were 54 months of undetectable PSA results to indicate the surgery had done the trick. Or so we thought.
When my first detectable PSA test came in five years ago, I was even more terrified and panicked than when I was initially diagnosed. It meant that my first line of defense had failed. Now I had fewer options to control or rid me of the cancer available to me.
My doctors convinced me that there was no need for immediate panic and that we could and should monitor my PSA before considering any action. My PSA fluctuated up and down, but had a slow but steady upward trend.
As my PSA continued to climb—passing several markers that are normally used to consider starting salvage radiation therapy—I continued to do nothing. I’ve been pretty steadfast in my reluctance to start zapping without knowing where the cancer is, and even some of the best new imaging techniques won’t pick up the cancer at my PSA levels.
With a PSA doubling time of four years, I’m comfortable with that decision. Heck. I’m still here five years after that initial detectable PSA reading, and ten years after my initial diagnosis.
We may find out a little more about my future direction next month when I go for my next PSA test just before Christmas. As I’ve learned (albeit slowly) over the last decade, don’t get too worked up about the results until you have them in hand. It just doesn’t do any good to speculate about the unknown. January will tell me whether I can continue the status quo or it’s finally time to take action.
If you asked me ten years ago when I started this blog (to keep family and friends informed in my pre-Facebook days) that I would still be doing this ten years later, I would have said you’re nuts. But here I am.
I’ve tried to inform and educate others about prostate cancer along the way, and to give insights to the newly diagnosed as to what you may encounter two, three, five, or ten years down the road. All the guys I spoke with pre-surgery had, themselves, only been less than a year out from their own surgery date. They had no long-term post-surgery insights to offer to me.
I’ve tried to inject a little dose of reality to those who, just like me, gleefully declared themselves to be “cancer-free” after a few undetectable PSA tests. “Not so fast.” My story is a reminder that there can be unexpected plot twists, even in the later chapters.
Along the way, I’ve met some wonderfully supportive men who have been through their own journey—some just virtually and some in person. Sadly, three of them have lost their battle with prostate cancer and they’re sorely missed.
It’s been a decade of living with prostate cancer. Living with. Let’s hope that I’m still around to write the blog post, “Two Decades Living with Prostate Cancer.”
A few weeks ago, I ran into the radiation oncologist that I spoke with a while back outside the hospital where we both work. We started chatting and he recalled our conversation in the office and asked how I was doing.
I filled him in on my latest PSA results (0.14 ng/ml) and my PSA doubling time (48.9 months), letting him know that we punted the ball down the field until December to see what the next PSA would be. I could tell from his reaction that he would have been less supportive of that call. His preference is to start zapping at 0.10 ng/ml. But he also went into the discussion about how each case is unique and how each patients has a different risk tolerance level.
We also talked about some of the longer term side effects of salvage radiation therapy, and he confirmed that some of my urinary incontinence and ED issues could worsen post-radiation.
His wife came to pick him up and the conversation ended. I do appreciate that he was willing to have the conversation at all, let alone off the clock.
As I said, the plan is to get my next PSA taken just before Christmas with the follow-up appointment scheduled 5 January 2021.
A while back I was checking my pay statement and noticed I had over four weeks of vacation on the books, which surprised me to a degree. Of course, with a global pandemic, I really didn’t have any opportunity to travel with pretty much everything locked down here in the United States.
I decided, though, that it was time to go on a trip, pandemic be damned. It had been nearly a year since I went anywhere.
The best way to be responsible in my travels was to load my camera in my car and head to some remote locations in a few of our national and state parks. That’s what I did and I was able to very easily maintain social distance 90+% of the time.
So I took a trip into Utah to visit its national parks—four of which I had never been to before. You can check out the details and photos of the trip here:
Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.
The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.
He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.
One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.
I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”
We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.
On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.
It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?
Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)
The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.
That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.
Prostate cancer is not an “easy cancer.” Far from it.
One of the cool things about working in a hospital is that I can access full versions of some of the scholarly articles on prostate cancer that are normally blocked to the public by their publishers. At the end of the day today, I pulled the full versions of each of these articles for a little light bedtime reading about salvage radiation therapy, toxicities, and imaging:
I skimmed a couple of them on the bus ride home this evening (as much as you can skim on a bouncing bus), and I’ll go through each in a little more detail before my appointment a week from tomorrow.
When I pull articles like this, I consider a few things when reading them:
So I’ll be going through each article, gleaning whatever I think may be of value for the appointment, adding to my list of questions to be asked.
Please don’t ask me to share the full versions of the articles here or elsewhere. Not only am I cancer-averse, I’m litigation averse. I’m not keen on a copyright infringement lawsuit because I posted something on this blog/website that I didn’t have permission to do. 🙂
That said, I may try to summarize some of the findings in future posts, with full attribution of any quotes, of course.
Off to read a bedtime story or two…
A little over a week ago, I hopped online around 10 p.m., checked my latest PSA results, and wrote my last blog post. None of that made for a good bedtime story.
The next day, I was exhausted from not sleeping well after receiving the news—so exhausted that I skipped out from work about an hour and a half early so I could go home and rest. Ever since then, I’ve been fine. I’ve accepted the new number and the fact that, once again, the only thing that I can control is how I react to it. In my heart, I expected the number to go up from the last test, and it did.
I did take a little time to search for some newer articles about salvage radiation therapy but they, like the PSA results, didn’t make for good bedtime reading either, so I put that on hold for now. I’ll be working on my list of questions for the doctor on 22 October, and we’ll go from there.
I’m pretty sure the writing is on the wall that that salvage radiation is in my future. It will take a while to get appointments set up for the radiation oncologist and to do any imaging that we can, and when you throw in the approaching holidays, I just don’t see radiation starting before the end of the year. I could be wrong. (Or, if things do happen quickly, I may just force the start to the beginning of the new year. Who wants to be getting zapped through the holidays? Seriously.)
In the mean time, I’m doing okay. Really. Just one appointment and test result at a time…
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.
Last Thursday, a physician came into our office (keep in mind my office is in a hospital) and was asking about how to bring a volunteer on board to shadow him in radiation oncology. Of course, my ears picked up with the “radiation oncology” part of his request.
After explaining the process to bring his volunteer on board, I asked him if Dr. W was still in radiation oncology. Dr. W was the radiation oncologist that I saw in May 2018 to discuss my rising PSA, and he told me then that he planned on retiring in the next year or so. Dr. W had, in fact, retired according to Dr. B, the physician with the volunteer question.
Dr. B asked how it was that I knew of Dr. W, so I explained that I had the consult with him for getting zapped for recurrent prostate cancer. A bit to my surprise, Dr. B started asking a question or two and, the next thing you know, we’re having a ten minute consultation in the lobby of my office.
In a nutshell:
At the end of the conversation, he was saying a treatment decision is also based on life expectancy and overall general health. Nothing new here. If I was 85 and had a cardiac condition, he wouldn’t recommend zapping; but if I’m younger and in generally good health, he would treat. “I would get treated if it were me.”
I thanked him profusely for taking the time to have a hallway consult when he was under no obligation to do so. I told him that I have another PSA test coming up at the beginning of October, and that we’ll see what that brings.
Now for the funny part and insights into how twisted my thinking can be at times…
Dr. B’s comment about life expectancy struck a chord with me because it’s something that I often joke about.
My father died at the age of 69 and his mother also died at the age of 69, so I’ve always joked that I’ll follow in their footsteps and die at 69, too. “It’s hereditary,” I’d say. Most would find it pretty morbid and tell me to knock it off.
If you’ve been reading this blog for longer than three minutes, you know I’m a numbers guy (see post title). So on the bus ride home after speaking to Dr. B, curiosity got the better of me. I wondered how freaky it would be if my father and grandmother lived the same number of days in their 69-year lives. When I got home, I ran the numbers.
I plugged their birth and death dates into the duration calculator that I use to calculate the day number of these impromptu posts and found that they didn’t live the exact same number of days, but it was close. Dad outlived Oma by 49 days.
You know I couldn’t just leave it there.
If I live as long as my grandmother, I’ll be checking out of Hotel California on 29 July 2027. If I live as long as dad, it will be 16 September 2027. If I follow Dad’s trend an outlive him by 49 days, it will be 4 November 2027.
And then I had my “Oh, shit!” moment.
I may have less time remaining than the amount of time that I’ve been running this blog—3,029 days (best case) vs. 3,175 days.
I began to wonder what I will do in those eight remaining years. If I have only one big trip a year, what are the eight places I want to go see? How many more times will I see the people important to me if we see each other only once ever 1-3 years? How much longer will I continue to work?
I know it’s cliché as hell, but it was a bit of a wake-up call to get me off my butt and doing more than I am right now. Nothing like having a deadline to motivate you, eh?
I also know that there are no guarantees. I could get hit by a car crossing the street tomorrow, or I could live until I’m 90. I don’t dwell on any of this, but it’s nice to be reminded—albeit in a twisted way—that none of us are getting out of here alive, no matter how hard we try to avoid the inevitable, and that the days we have left should be cherished and embraced, whether in ways big or small.
Oh. If I make it to 5 November 2027, everything from then on is icing on the cake. 🙂