No surprise here. In my spreadsheet, I put a placeholder value of 0.50 ng/mL for this PSA test based on the previous trend, and the actual result came in slightly higher at 0.52 ng/mL.
It seems safe to say that the salvage radiation therapy failed to do the trick.
I am trying to describe my reaction to this hour-old news. I guess words that I might use would be: numb, indifferent, resigned. I don’t know. It’s a bit weird. I certainly had zero expectation that my PSA would go down or even hold steady given the previous trend.
You may recall the conversation with the medical oncologist suggested that we monitor and do another PSMA PET scan in six months, which would make it August. The question now is, based on these results, do we stick with that plan? Or do we move to the discussion on the type of androgen deprivation therapy and the timing of ADT?
I did ask the phlebotomist if he was drawing blood for a testosterone baseline test and he said yes. I don’t see the results posted online yet (my record is still going through its once-a-day update as I type this).
Well, it’s after midnight. I’ll sleep on this and perhaps I’ll be a tad more focused in the morning after having processed this.
What’s next:
9 May – Appointment with primary care physician (annual physical)
14 May – Appointment with urologist
Header Image: Scenes from San Diego Bay, San Diego, California
This will be a Reader’s Digest version of a future longer post. My computer died Sunday night and I’m not keen on trying to type out the full report on my phone’s itty-bitty keyboard.
The bottom line for now is to watch my PSA for the next three to six months, perhaps with another PSMA PET scan in six months if my PSA has increased sufficiently to be reasonably assured that the scan could detect something. I’m okay with that approach.
If my next PSA has a sizable increase, we’ll reevaluate.
The meeting lasted around 30 minutes, so there are more details to share once I get access to a computer again.
I’ll go for a PSA test (and get a testosterone baseline) on 1 May in advance of a 9 May meeting with my primary care physician and a 14 May meeting with the urologist.
With luck, I’ll have a full update by the end of the week.
A moderator on the HealthUnlocked website shared a link to the new 2024 American Urological Association guidelines for salvage therapy for recurrent prostate cancer:
Today’s meeting with the urologist went about as I expected it would. In a nutshell, we agreed to punt for another three months and see where we’re at with a new PSA test at that time.
We talked about the clean PSMA PET scan results and the fact that we remain in this inconclusive gray area right now that doesn’t bode well for making decisions about the next steps. He did suggest that I could start ADT now if I wanted to do so, and he debated about whether it would be appropriate to start ADT with abiraterone. He leaned toward just starting without abiraterone if ADT is what I wanted to do, but I also sensed that he felt no need to rush into this given the negative scan results.
One interesting comment that he made (and I wish I had taken better notes) was along the lines of ADT alone has not been shown to extend life expectancy. The unsaid implication was, “Why go through the side effects of ADT now if studies show there’s no discernable difference in the outcome?” That’s something that I need to dig into a little more.
One interesting thing that’s popped up in my conversations with others in prostate cancer forums or here is testosterone level testing. In all my years of being treated, my testosterone level has never been tested, so we talked about that. It’s something that we can do just prior to starting ADT to establish a baseline reference point.
I mentioned my email conversation with the radiation oncologist, and talked about the possibility of zapping a lesion should it show up on a PSMA PET scan in the future. The urologist seemed a bit indifferent to that approach (probably an occupational hazard).
During the conversation, I mentioned that my PSA doubling time using the last four values was at just over six months, and he commented that that was “not insignificant.”
We did discuss whether there was value in knowing where the cancer was located at this point, or to just know that the cancer is somewhere and proceed with systemic treatment without knowing its location. My concern is that starting ADT would make finding the location next to impossible on a PSMA PET scan if my PSA is knocked down to near zero.
He kept using the term “metastatic” throughout the conversation which, I suppose, is technically correct. If the cancer is someplace other than where it started, it’s metastatic. But I’ve also learned that there is a lot of gray area in the prostate cancer world when it comes to classifying how and what your cancer is.
I also asked for a consult with a medical oncologist to get his/her insights on where I’m at and what should be done next and he was going to put that request in for the consult.
I have a three-month follow-up appointment and PSA test scheduled for 14 May 2024, so the saga continues.
About an hour after I returned home from my appointment, the PCRI posted this very timely video on micro-metastatic prostate cancer.
I’ll probably publish this video as a stand-alone post so it’s easier to find.
Header Image: La Jolla Shoreline, La Jolla, California
Okay. I got antsy and went for my PSA test on Friday instead of next week. As expected, my PSA increased from 0.33 ng/mL on 6 December 2023 to 0.37 ng/mL on 19 January 2024.
The silver lining in that cloud is that the rate of increase slowed a bit and it didn’t increase as much as I expected it would.
Sometimes, I get too nerdy for my own good. There was a 91% increase between the May and October readings, and there was a 57% increase between the October and December readings, so I averaged the two increases (74%) and projected that this increase would land me at just over 0.5 ng/mL. This increase ended up being just 12% over the previous December reading. Fickle PSA.
I ran the numbers through the Memorial Sloan-Kettering PSA Doubling Time calculator again, using the five values from March 2023 (0.13) on. My PSA doubling time dropped from 6.7 months to 6.2 months, and my PSA velocity increased from 0.2 ng/mL/yr to 0.3 ng/mL/yr since calculating it back in December.
I went for the test early because I really wanted to know the PSA value going into the PSMA PET scan that’s scheduled on 31 January 2024. Plus, if it dropped, I would have had time to ask the urologist if it was worth going ahead with the scan at a lower PSA level. (Remember, I went for a PSMA PET scan when my PSA was 0.22 ng/mL, and it didn’t show anything at that PSA level. Why subject myself to another dose of Gallium-68 if the outcome may not produce any useful information?)
My follow-up with the urologist to review the PSMA PET scan and PSA results is on 13 February, and we’ll map out what’s next from there.
So that’s the latest and greatest. More to come.
Header image: The famous Torrey Pines Golf Course, San Diego, California, home to the Farmers Insurance Open golf tournament
The suspense of not knowing what my PSA was up to was killing me, so I went a couple of days earlier than I planned to have my PSA test. I was expecting it to go up a bit, but I wasn’t expecting it to leap a tall building in a single bound.
My PSA jumped from 0.21 ng/mL on 31 October to 0.33 ng/mL on 6 December, a 57% increase in five weeks. Ugh. Using the four PSA values from this year and Memorial Sloan Kettering PSA Doubling Time calculator, my PSADT is 6.7 months.
I’d say it’s safe to conclude that the salvage radiation therapy missed the mark, but I’ll confirm that with an in-person appointment with the urologist on Thursday, 14 December and with the radiation oncologist via email.
I’m writing this late on Thursday night, about 20 minutes after seeing the results online, so I’m still shocked and processing it all. I’ll wrap this post up in the morning…
Back at the keyboard Friday morning after a somewhat fitful night of sleep…
Needless to say, this was (and still is) a bit of a gut-punch for me to see the PSA increase so rapidly. It’s definitely got me concerned and wondering where the cancer is if the radiation didn’t even make a dent in it.
So what’s next? I don’t know. I suspect these would be a few possibilities:
First, maybe let the PSA continue to rise a little more until it’s over 0.5 ng/mL but less than 1.0 ng/mL to give a PSMA PET scan a better chance of picking up where the cancer is located. At 1.0 ng/mL, PSMA PET scans can find the cancer about 90% of the time.
If there are only a couple of localized lesions, we may be able to radiate them.
Second, I’m sure androgen deprivation therapy (ADT) is definitely on the horizon, whether we do a scan and radiation or not. My only question would be the timing of the ADT. If it’s given before a scan, would that make it more difficult for the scan to pick up the lesions? I don’t know.
Last, Dr. Mark Scholz of the Prostate Cancer Research Institute, recently posted a video where he talked about a shift in how they approach treating advanced prostate cancer. (I’ll post the video in a separate post.)
Traditionally, treatments were offered sequentially. You’d start with hormone therapy, and when the cancer became resistant, you shifted to a different type of hormone therapy. When that failed, you would move into chemotherapy, a PARP inhibitor (immunotherapy), injectable radiation, and finally clinical trials.
There is research showing that combination therapies may be more effective in staving off the cancer. Instead of just starting out with ADT, it may make sense to combine ADT with radiation or ADT with chemotherapy right out the gate. Yes, there may be increased immediate side effects from the dual treatment, but early studies are showing higher cure rates and longer survival. Additionally, if the combined treatments are successful, this may lead to a better long-term quality of life because you may be able to be taken off ADT.
My appointment with the urologist is on Thursday, 14 December, and you bet I’ll have a ton of questions ready. One of them will be about getting a full-blown medical oncologist who specializes in prostate cancer involved at this point.
In the meantime, I’m going to have to start learning the language of advanced prostate cancer. There are so many different drugs and treatments with weird names that don’t really indicate what they do or how they’re used that it’s tough to keep them straight. Perhaps a spreadsheet may be in order…
I am trying to look for the silver lining in the cloud. I guess that would be that my PSA is still quite low. But the dark part of the cloud is the fact that I’m probably entering the phase where the treatments and their side effects will eventually be worse than the disease when it comes to daily quality of life. I tolerated the six-month dose of Eligard in 2022 pretty well, but it wasn’t without side effects. I guess I’ll cross that bridge when I get to it.
Oh. And I’m open to any and all insights from those who have traveled this path ahead of me.
Well, time to get out of the house and try to put this out of my mind for a brief period. (Translation: Escapism.)
I emailed the radiation oncologist yesterday and his response at 6:13 a.m. Saturday 😮 was about what I expected:
He agreed with another PSA test and recommended doing it in six weeks (mid-December).
Reminded me that the current PSA of 0.21 ng/mL is still below the starting point of 0.36 ng/mL at the beginning of radiation, so in his eyes, this is technically not progression, but…
He also agreed that the “trajectory means we need to keep a closer eye on it.”
I emailed the urologist to request another PSA test before our appointment on 14 December before I received the response from the RO, and I’m awaiting the urologist’s response. I’ll forward the RO’s recommendation to reinforce my request.
I’m hoping I can get the PSA done on Friday, 8 December or Monday, 11 December in time to have the results for my 14 December appointment. That would be close enough to the RO’s mid-December recommendation. (Why does this crap always seem to happen just before the holidays???)
Halloween threw an evil trick at me just ahead of my 13th anniversary of being diagnosed: My PSA nearly doubled, jumping from 0.11 ng/mL to 0.21 ng/mL in just under six months (9 May 2023 – 31 October 2023).
Needless to say, that was not the result I was expecting. I was hoping the salvage radiation and androgen deprivation therapy from the summer of 2022 would have helped put this crap behind me or at least do a better job of controlling it.
What does it mean?
I’m trying hard not to get ahead of myself, but the answer seems pretty obvious: the cancer survived the zapping and is thriving. For me, the fact that it essentially doubled in six months is the biggest concern. If my PSA drifted back up to 0.13 ng/mL, even I would say that I was getting ahead of myself, but it doubling is something else—something more conclusive.
Another factor making me think this is the “real deal” is how rapidly my PSA shot up in the months before the SRT. It went from 0.22 ng/mL on 14 October 2021 to 0.36 ng/mL six months later on 18 April 2022.
From my lay person perspective, this is significant because it means that the window on curative options is closing (closed?) and, going forward, we’ll be more focused on management options that try to slow the inevitable growth of the cancer.
It’s not all doom-and-gloom, though. There are plenty of prostate cancer patients who have been on systemic treatments (hormone therapy) for a decade or longer, keeping their cancer in check. The problem is the side effects of the treatment can substantially impact quality of life, and there’s the chance that the cancer becomes resistant to the hormone therapy, much in the same way that bacteria become resistant to antibiotics.
I have an appointment next week on 9 November with my primary care physician, and with the urologist on 14 December, and it will be interesting to hear each of their perspectives. I emailed the radiation oncologist and get his take, too, while also asking for a refund.
What’s Next?
Again, from my limited knowledge and perspective gained by dealing with this for thirteen years, I suspect the doctors will tell me:
To re-test the PSA in one to three months to confirm the upward trend and doubling time.
If it continues to increase, perhaps schedule another PSMA PET scan to see if we can locate where it’s at or how far it’s spread, if at all.
If we can locate it and it’s a single lesion or two, perhaps another round of radiation may be in order to target those specific lesions.
If we can’t locate it, I suspect systemic approaches will be used. This would most likely mean extended hormone therapy. It could possibly mean chemotherapy, but I suspect that would be delayed until later.
Or it could be a combination of any or all of the above options.
All of those options come with potentially significant impacts on quality of life.
Final Thoughts
This was a crappy end to an equally crappy month.
On Friday, 13 October (lucky day), I found myself in the Emergency Room with symptoms indicating a cardiac event might be happening. Fortunately, there was no sign of heart attack or stroke. The symptoms puzzled the ER doctor, so he prescribed that I wear a Zio patch continuous heart rhythm monitor for two weeks to see if it catches any irregularities. That comes off on Monday, 6 November and will be sent off for analysis.
The kicker, though, was that I had scheduled an 18-day bucket list trip to New Zealand departing the following Monday, 16 October. I still had some minor symptoms on Saturday morning, so I decided the best and safest course of action was to cancel the trip. (Thankfully, I booked a mostly refundable ticket, and had travel insurance for the remainder.) Disappointing, to say the least.
Perhaps it was meant to be, because an expensive plumbing issue arose at my house that would have needed to have been addressed while I was away.
And now, to put the icing on my October crap cake, my PSA doubles. Ugh.
I won’t lie. When I saw the results online, the news hit hard. I was hoping that it would have continued its downward trend, but I also knew that it could go up, too. I just wasn’t expecting it to go up that much so soon. I would have been happy if the salvage radiation had my PSA hanging out at 0.11 ng/mL for the next decade or so. But I guess that’s not meant to be.
To be transparent, I did question for a moment whether holding off on SRT as long as I did was the wrong decision, but I quickly cast that thought aside. I made that decision with the information I had at the time, and with a desire to avoid treatment side effects for as long as I could. Whether it was right or wrong, no one can say. I’m here now and will have to deal with the present facts. No amount of second-guessing will ever change that, so it’s not worth the effort or energy to do so.
What I’m regretting more at the moment, is cancelling the trip to New Zealand. If a PSA test in December or January shows continued increases in my PSA, I’m guessing that we’d start hormone therapy at the very least. Traveling great distances for a long period while on hormone therapy may not make for the best experience. We’ll see. (Aside from the fatigue and heightened emotions, I seem to have tolerated the Eligard fairly well compared to many.)
Lastly, I’m going to have to do more research on what my options will be and what the current treatment protocols are for someone in my situation.
My summer and early autumn hiatus away from posting on this blog—a refreshing break from cancer—appears to be ending as I start what is likely the next chapter in this story. Stay tuned for more.
Header image: Imperial Beach Pier at sunrise; Imperial Beach, California
Here’s a great video highlighting the decision-making dilemma that comes with a rising PSA after surgery.
It reinforces that I wasn’t nuts in agonizing over my decision to move forward with the decision for salvage radiation. There are just so many variables that go into the decision, and even the “experts” are really just taking their best guess at it.
I checked in at 7:30 a.m. for my 8 a.m. appointment and was a bit nervous but doing generally okay. But around 8:05 a.m., the nurse came out and said, “I know you’re here for some medication, but the doctor forgot to enter the order for it to be administered into your record. We’re trying to track her down now and we’re not sure how long it will take.”
Needless to say, I was not a happy camper.
About 8:45 a.m., the nurse came back out to the waiting area for another patient, and I interrupted and asked him the status of tracking down the doctor. “Oh. We haven’t found her yet. We’re trying to contact any doctor but most don’t come in until after 9 a.m.”
Still not a happy camper.
As you all know, I’ve anguished over the decision to move forward with androgen deprivation therapy (ADT) for a while now. Once you make that decision, you want to move forward with it and psychologically prepare yourself for the event. When you’re given an extra hour and a half, your mind begins to race and to question whether to move forward with this essentially irreversible procedure. At least that’s what my mind did. Call me silly.
The injection itself went well. In fact, it was not much worse than getting my second COVID booster shot last week (or any vaccination). It’s been about three hours since the injection, and the injection site isn’t even sore. It was pretty much a non-event. Time will tell what other side effects will kick in, and how severe they may be.
Well, the stress from this morning has worn me out. Time for a little nap.
Dan's Journey through Prostate Cancer 