Here’s another timely (for me) and educational video from Dr. Scholz and the Prostate Cancer Research Institute.
I have an appointment with the medical oncologist on 19 March, and this has given me a good foundation for the discussion.
Tag: Radiation
Month 159 – Meeting with Urologist
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
Day 4,782 – Doctor Discussions
I’ve had conversations with my radiation oncologist and my urologist this week.
UCSD Radiation Oncologist Discussion
The conversation with the RO was via email, which was fine by me. I’m thankful he takes the time to get back to me. In a nutshell, he said:
- We’re on the verge of needing to do a PSMA PET scan.
- We should get the PSMA PET scan before any ADT.1
- If PSMA PET shows limited site(s) of recurrence, SBRT radiation may be an option to “ablate the larger cancer deposit and work in concert with ADT.”
His recommendation was to get the PSMA PET scan now or to wait one month until early January 2024 and take another PSA test. If it remains steady, “we are good,” but if PSA rises again, it would be time for a PSMA PET scan.
I’ll let him know it took me two months to get my first PSMA PET scan at UCLA after speaking to the scheduling office, so getting it “now” may not be an option.
One other thing I need to nail down is where I can get the scan done again. When I had it in November 2021, the only two facilities in the U.S. that were approved to do the scan were UCLA and UCSF. Since then, far more facilities are capable of doing it, I believe including UCSD.
VA Urologist Discussion
Preparing for the meeting today, I put together an outline of things I wanted to discuss:
- PSMA PET Scan
- If the VA would cover the cost this time.
- If there’s a difference in the tracers used (Ga-68 versus PYLARIFY® (piflufolastat F 18)
- ADT and the timing
- Whether they prefer a sequential or combination approach (e.g., include chemotherapy with ADT).
- Getting a medical oncologist who specializes in prostate cancer involved in the case.
But once I got there, I was definitely off my A-game for some reason, and the conversation was one of the weirder, more disjointed conversations that I’ve had with a VA urologist.
First, he was a new (to me) urologist and he entered the exam room a bit like a bull in a China shop. He didn’t introduce himself and just started out with, “I looked at your PSA and read your email. What questions do you have for me?” Not even so much as a, “Sorry to see your PSA increase after SRT.” That threw me off right there.
It was a bumpy conversation, but we eventually talked about most everything on my list. I’ll save the bit about the scan for last.
Interestingly, he seemed to downplay spot radiation if lesions are found during a scan and was more focused on starting androgen deprivation therapy as the next course of treatment. But he wouldn’t start it until after a scan was completed. He did say under certain specific circumstances, spot radiation may be helpful.
In the discussion about sequential versus combination treatments, he said that they would do a combination. I asked if it would be ADT and chemotherapy, and he said no. It would be ADT and antiandrogen therapy in combination using Eligard for the ADT and one of the following:
I asked about chemotherapy with ADT, and he said that the antiandrogens have taken the place of Docetaxel (Taxotere), which I thought was an odd statement from my limited knowledge. I believe that Taxotere is still very much a treatment option used later in the progression of the cancer. I need to dig into that more.
Concerning shifting my case to a medical oncologist (MO), he said that would happen on its own, as he wasn’t allowed to prescribe the antiandrogen drugs. The MO would also know how to better manage the side effects of the combined therapies.
Now, for the kicker part of the conversation…
He agreed that a PSMA PET scan was the best way forward but—and even he disagreed with this—the VA protocol is to have a bone scan first. The protocol said that, if a bone scan was negative, then a PSMA PET scan could be authorized.
He assured me that, at my PSA level of 0.33 ng/mL, the bone scan would, in fact, be negative. (Doing a quick Dr. Google search, it appears that bone scans start to pick up lesions when the PSA is over 20 ng/mL. Yep, 0.33 vs. 20.
So getting my soapbox and editorializing a bit here… It makes zero sense to get a bone scan in my present circumstances. None. The VA can be very slow to catch up with the times in certain circumstances, and this happens to be one of those times. It just seems to be a waste of time and resources when we already know that the bone scan isn’t sensitive enough to pick up anything at my PSA level. But I’m not sure I’m up for “fighting city hall” to try and get the PSMA PET scan out of the gate.
On a positive note, the VA apparently can now do the PSMA PET scan according to the doctor.
I have to admit that I’m toying with the idea of using my Medicare coverage and going outside the VA for the PSMA PET scan and skipping the VA bone scan altogether. I need to dig into that and see how that would work and how quickly that could happen.
I just want to make sure that I’m not shooting myself in the foot in the process—the VA has to authorize community care in advance for them to continue to cover the costs. I don’t want them to say, “Hey, you chose to go outside the VA system, so now you can pay for all the tests and drugs.” I know Medicare would pick up a good chunk of the costs, but I may be on the hook for more than I bargained for.
The urologist thought the bone scan could be scheduled pretty quickly and, if that’s the case, that may put me closer to a PSMA PET scan faster than if I try to go outside the VA and create new relationships with new providers (although I think my radiation oncologist at UCSD may be able to assist me in ordering one and getting it scheduled).
We ended the conversation with him saying that we’ll do another PSA test in three months. That surprised me a bit given its rapid rise over five weeks. “We know it’s going to increase,” he said, but he did offer to retest in six to eight weeks. I don’t think we ever landed on a firm answer, so I need to chase that down.
In a way, though, it’s probably more important to get the scan(s) done first, and tracking the PSA is secondary to that. Does it really matter if we retest PSA in eight weeks versus twelve weeks? I doubt it.
I left the meeting without:
- A date to have the bone scan.
- A follow-up date with the urologist (dependent on scan results).
- A date for the next PSA test.
Sounds like a productive meeting to me. 😂
One other thing that happened today, which was quite unusual for me, was that I was far more nervous going into it than I should have been. I don’t know what was up with that. I had difficulty articulating my thoughts, and my hand was shaking ever so slightly as I was taking notes. That freaked me out even more. I guess the emotions associated with this new chapter have been a bit more than I expected.
When the meeting was over, I sat in the waiting area for a good ten minutes to just decompress and to scribble down a few more notes while the conversation was fresh in my mind.
Once I calmed down, I went to the Nuclear Medicine department to try to schedule the bone scan, but the scheduler was away and the guy staffing the desk wasn’t familiar with the process. I’ll be back there tomorrow morning for another test2, so I can try scheduling again when I’m there tomorrow.
I’ll keep you posted.
- This aligns with what Dr. Scholz says in this video. Taking ADT before the scan may reduce the size of the cancer to the point where the scan can’t pick it up. https://youtu.be/CBILHS0FJfk?si=zaoHCOkm-mWOmdyz&t=525 ↩︎
Day 4,585 – Doctor Meetings
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.
Watch “A Medical Oncologist Compares Surgery and Radiation for Prostate Cancer| Mark Scholz, MD | PCRI” on YouTube
This is an informative video that would benefit the newly diagnosed prostate cancer patient.
It talks about some of the more recent advances in radiation therapies that really should be considered when making a treatment decision.
Long-term benefit of radiotherapy confirmed in advanced prostate cancer
This showed up in my inbox and I found it interesting.
It appears to be focused on initial treatment rather than a salvage setting, and showed that even for those newly diagnosed with advanced prostate cancer that had already spread, there was benefit to radiating the prostate:
“The initial 2018 findings of this arm of the STAMPEDE trial were slightly surprising. Previous thinking was that if the cancer had spread then the horse had bolted and there was no point in shutting the stable door by treating the original disease site. These long-term results have confirmed that this is not the case, and by treating the original site after the disease has spread, some men with prostate cancer lived longer than those on hormonal therapy alone. This could potentially benefit people with other cancers that have spread to other parts of the body too.”
Professor Nick James, Professor of Prostate and Bladder Cancer Research at the ICR, and Chief Investigator of the STAMPEDE trial
Here is the link to the original article:
Long-term benefit of radiotherapy confirmed in advanced prostate cancer
Watch “The Pros and Cons of Proton Therapy | Mark Scholz, MD | PCRI” on YouTube
For those exploring radiation therapy options, here’s an informative video about proton therapy.
Common Steroid Could Improve Prostate Cancer Radiotherapy Outcomes
A link to this article showed up in one of my prostate cancer newsletters that I receive. There’s a link to the original study report in the article, and it’s way over this layman’s head to make heads or tails of it in a brief read-through before my zapping session.
I didn’t dig deep enough to see if this applies equally to primary radiation therapy and salvage radiation therapy (because it’s not yet approved for use and too late for me).
A new study suggests that unwanted side effects of radiation treatments for prostate cancer could be reduced by the common steroid betamethasone.
Source: Common Steroid Could Improve Prostate Cancer Radiotherapy Outcomes
Dr. Kwon Video – Part 2
Here’s the second part of Dr. Kwon’s video. Like the first video, it’s very informative (perhaps even more so, at least for me).
Even though I had seen similar statistics before, one of the kickers for me is that only 33% of recurrent cancer is found in the prostate bed (local); 45% will be metastatic; and 22% will be both local and metastatic. As Dr. Kwon rightly points out, knowing where the cancer is located will guide your treatment decisions, and that’s why I have been so reluctant to blindly step into salvage radiation therapy without having first identified the location of the cancer. Why risk the possible toxic side effects of radiation if you’re not radiating in the correct location?
In my previous post, I mentioned that Dr. Kwon was a pioneer in dealing with oligometastatic prostate cancer. At the beginning, many in the profession dismissed his work out of hand (I’ll admit I was skeptical, too), but it seems that over the last 10 years, his work has gained the respect of others and is supported by further research.
In any case, this video is 31 minutes long and I encourage you to watch it.
Dan's Journey through Prostate Cancer 