This hour and fifteen minute long video from the Prostate Cancer Research Institute and Dr. Mark Scholz was incredibly informative to me given my recent uptick in PSA and where I may be heading.
He talks about the various types of advanced prostate cancer and the different treatment options or tools that are available to manage or even try to cure it.
One thing he talks about (starting around 17:15 in the video), is the shift from the historical approach of using sequential treatments to using multiple treatment methods simultaneously to attack the cancer. That looks to have promising outcomes.
The main presentation ends around 36.5 minutes into the video, and it’s followed up by an interview with questions and answers for the remainder of the video.
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.)
Here is another informative video from the Prostate Cancer Research Institute and Dr. Scholz. It hit too close to home for me, as it describes the dilemma I faced in deciding when to initiate salvage radiation therapy.
Perhaps the key point that Dr. Scholz makes (at 6:08 in the video) is that there’s “a huge advantage of knowing where the cancer is and allowing the radiation therapist to target that spot” as it relates to a newer approach of letting the PSA rise so that modern imaging can determine the location(s).
Later in the video at the 9:40 mark, he goes on to say:
It’s quite tempting in many of the cases that I see to allow the PSA to go a little bit higher knowing that that 0.5 threshold [used by radiation therapists] was set at a time when we didn’t have scans and we didn’t know where the cancer was. There’s such an advantage of knowing where the cancer is and allowing the radiation therapist to target the disease that I tend to liberalize a little bit and allow the PSAs to rise above 0.5 if necessary.
In other words, because of the value in knowing the location of the cancer that can lead to curative outcomes if properly targeted by the radiation therapist, it may be worth allowing the PSA to rise to the point where it can be detected on a scan.
I toyed with the idea of getting a second PSMA PET scan when my PSA hit 0.33 and 0.36, but because it was rising rapidly and because I knew it could take two to four months to get another PSMA PET scan scheduled, I opted to act and go ahead with the salvage radiation therapy. I do have to question if it may have been wise to do the second scan so the RO knew exactly where to aim because, with my PSA rising again, we may have missed our mark.
Will I dwell on that? Nope. I made the best decision I could with the information available at the time.
The bottom line is that we all have to assess our own risk levels and be comfortable with our decisions.
The urologist agreed with the radiation oncologist’s recommendation for another PSA test just before my 14 December 2023 appointment, and put the order in the system for me to have the test. I’ll probably try to have the blood drawn on 8 December or so.
I met with my primary care physician today. He had seen my most recent PSA test, and thought the 0.21 ng/mL reading was pretty good post-radiation. But it was clear to me that he didn’t compare that to the previous test and, when I told him it nearly doubled, he agreed that it was a concern.
Regarding my cardiac mystery, he ordered an echocardiogram and a cardiac stress test, and the cardiac department schedulers should call me next week to set that up.
I had worn a Zio patch heart rhythm monitor for two weeks ending this past Monday, 6 November. I shipped the device to the facility that analyzes it that same afternoon, and they just received it this morning according to the shipping tracking number. The doctor said it can take a week to ten days for the data to be downloaded, analyzed by cardiologists, and a report generated.
I’m still having occasional and usually brief episodes (< 10 minutes) of what I would call minor palpitations or fluttering, so I’ll have to keep an eye on that while all of this is going on.
So, we’re back in the test and wait phase for now. Stay tuned for more.
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
This is an excellent hour-long video on advanced prostate cancer and its treatment from the Prostate Cancer Research Institute and Dr. Kwon.
You may want to watch this on a computer with a monitor instead of your mobile device, as the print in the slides that are presented is rather small and difficult to view on a small screen.
I’ve definitely been derelict in my blogging duties this summer, and that’s okay. My last regular update was in May and it’s now September—otherwise known as Prostate Cancer Awareness Month.
It’s time to help spread the word about prostate cancer to those in your lives that need to hear the message.
As far as my own status is concerned, I’d say that I’m back to my post-surgery, pre-radiation days with no appreciable side effects aside from mildly increased urinary urgency that’s manageable.
My next PSA test will be in November. As a refresher, my post-radiation PSA results were:
November 2022 – 0.05 ng/mL
March 2023 – 0.13 ng/mL
May 2023 – 0.11 ng/mL
Let’s hope the downward trend continues.
The excitement of the summer was about two weeks ago when the remnants of Hurricane Hilary came into San Diego as a tropical storm. It’s the first time since 1939 that a tropical storm landed in San Diego. The last time a hurricane hit the area was 1858. Needless to say, we don’t have a ton of experience preparing for such storms, unlike Florida and the Gulf Coast states.
Luckily, there was minimal damage here in San Diego (none to my home), but substantial mudslides, rockslides, and flash flooding in the mountains and deserts east and north of San Diego.
Header image:Coronado Beach Sunset, Cornado, 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’ve had conversations with both my radiation oncologist and urologist in the last few weeks, and we all seem to be on the same page.
Both agreed that the bump up in my PSA from 0.05 ng/mL in November to 0.13 ng/mL in March was simply a result of the Eligard wearing off. They also agreed that the downward movement from 0.13 ng/mL to 0.11 ng/mL was a good sign, and that it was still too early to see the full effect of the salvage radiation therapy on its own or to establish a nadir that we can use as a baseline for future monitoring.
We also talked about the side effects that I experienced during and after the radiation, and how they’ve pretty much dissipated over time.
The urologist did explain that if radiation was my primary treatment, that they would wait until my PSA rose to 2.0 ng/mL above my nadir before attempting any further treatment options. But given that I’ve had surgery and salvage radiation, she said that we would be looking at action if my PSA rose to 1.0 ng/mL above my nadir. Something to keep in the back of my mind.
She also said that it’s pretty common for the PSA to fluctuate a bit after salvage radiation, so it may be a tad difficult to establish a trend over time.
Bottom line: Both were pleased with where I was at; both were cautiously optimistic that my PSA would continue to trend downward; and both recommended another PSA test in six months. That means I’ll be back in the urologist’s office on 5 December 2023.
I made a quick trip back to my home state of Illinois over the Memorial Day weekend for our annual gathering with family and friends. It was a great time with perfect weather.
Header Image: Sunset over the Cornfields near Effingham, Illinois.
Dan's Journey through Prostate Cancer 