I’m not sure how I managed it, but I picked up a nasty head cold after yesterday’s meeting with the oncologist. Perhaps it was from being at the hospital two days in a row, or from me riding our commuter-packed light rail system to get to the hospital (stops right at the hospital) that did me in, but whatever bug I caught kicked in around 5 p.m. yesterday.
Around 7 p.m. tonight, I was nursing the head cold, watching the ballgame on television when my phone rang, and I was surprised to see it was a call from the VA.
It was the head of the urology department inquiring about continuing my pelvic floor therapy at a community provider. (You may recall that I started that back in December, and the original end date of the therapy was 2 April.) I told her that the therapist and I agreed that I had plateaued and didn’t see a need for me to continue.
Not one to miss an opportunity, I mentioned me meeting with the oncologists yesterday and asked her for her take on whether starting hormone therapy would be appropriate. I also mentioned the negative scan results. She was more of the mindset of waiting until there was evidence of spread, and she said, “I wouldn’t chase numbers,” when I mentioned my current PSA level.
She noted that I had the follow-up with the oncologists on 2 June and a follow-up with urology on 23 June, and said we can review things then.
Once again, the “experts” offer differing approaches, and it’s up to us, the patient, to pick and choose what’s best. After 15 years, it’s not a surprise, but it still is frustrating at times. MO Jr. did mention that it may be appropriate to convene the “Tumor Board” to get all the key players in the same room and review the case for the best course of action.
At this point, I’m inclined to get the PSA test at the end of May and, with that new information, try to push to get everyone in the same room for a discussion of next steps forward. Or at least have them convene the Tumor Board without me.
In the meantime, I’m just going to curl up in a ball and try to get the worst of this head cold behind me before the weekend.
As soon as I hung up the phone with the doctor yesterday, I started memorializing our conversation in Google Keep while waiting for my turn in the barber’s chair, and that was the outline I used for last night’s post about the conversation.
As I said last night, I had planned on documenting the conversation in an email to the doctor this morning. I drafted what I thought was an accurate, reasoned response but, before I was going to send it, I wanted to see if I could get his take on the conversation in my patient notes. I logged onto the patient portal and found his notes from the conversation.
Apparently, the doctor and I have had a massive disconnect.
He mentioned our discussion about Axumin scans, saying, “that this is not recommended at this time given prior negative PSMA PET imaging and the limited likelihood that Axumin would provide additional clinically actionable information.”
He also referenced our discussion about Pylarify scans, saying, “he recently underwent PSMA PET and that repeat advanced imaging would not be expected to change immediate management. Will review timing/appropriateness of repeat PSMA-based imaging if PSA continues to rise.”
He closed his comments with a recommendation to see Hematology/Oncology.
It was like a sucker punch to the gut—I had a genuine physical reaction to reading his notes.
This tells me two things.
First, he is not convinced that there is such a thing as a PSMA-negative patient for whom PSMA PET scans won’t work. That view is reinforced by his comments yesterday that he was confident my cancer expresses PSMA. In his mind, the 68Ga-PSMA-11 PET scan is definitive in its findings.
Second, it tells me that he isn’t pursuing any alternate imaging at all. Just let my PSA continue to increase and try again with another PSMA PET scan.
Needless to say, I discarded my draft e-mail to him, stepped away for most of the day, and have just been trying to process how to proceed. Of course, I’ll re-write my email to him politely highlighting the disconnect between our versions of the conversation.
I wish I could understand his reluctance to believe that I may be PSMA-negative. A quick search last night gave me a handful of papers from reputable organizations on the topic:
Of course, there’s a lot of gobbledygook that goes way over my head in those papers, but the common theme is that PSMA-negative patients do exist and that affects imaging. They only possible distinction that I’ve come up with from briefly skimming those papers is that more aggressive cancers seem to express more PSMA than less aggressive cancers. Maybe the doctor could confirm that or educate me.
Of course, the Prostate Cancer Research Institute has a video on this very topic:
What’s next? I’m thinking that I’m going to pursue two parallel paths, one within the VA and one outside of it. Both will likely take weeks if not months to pursue. (I’m not panicking about this, but I also don’t want to keep kicking the can down the road without doing anything to guide our decision-making, especially seeing as my PSA doubling time seems to be shrinking.)
Within the VA, I’m going to:
Write the urologist and let him know that I came away from our phone call with a completely different take.
Push to get the appointment with Oncology and hope to enlist them as an ally in trying to get an alternate scan sooner rather than later. In the in-person meeting, the urologist seemed to be deferential to their opinion.
If neither of those result in any action, I’ll meet with the patient advocate at the VA and see if that can break the log jam either within the VA or by allowing me to gain community care outside of the VA.
Outside the VA, I’ll look at:
Identifying what’s needed to become a patient at UCSD. It may not require much, as they did my salvage radiation therapy almost four years ago.
Try to set up an appointment with the medical oncologist that the VA consulted when we talked two years ago.
Get his take on alternate imaging.
I will tread very carefully because I don’t want to screw up any eligibility for care within the VA by going outside the VA or create confusion as to who is really taking the lead on my care. That’s why it’s really best that, if the VA can’t or won’t pursue additional screening, that they are the ones who initiate the request for community care. It’s something I need to research.
So that’s how I’m going into the weekend. How about you?
My fourth PSMA PET scan is in the books. If I keep this up, I should join a PSMA PET scan loyalty club—have five scans and get the sixth one free.
It started with me drinking 500 ml of water two hours before the the scan. On arrival, I was weighed (I guess to help calculate how much Gallium-68 to inject?), and the tech started an IV. He walked away and wheeled in a cart with a small, lined box containing the injection syringe, and pushed the glow juice into my arm through the IV.
Once the juice was in, he removed the IV, and I leaned back in my recliner for the hour-long wait for the juice to make its way through my system. At the end of the hour, we headed to the scanner room where I emptied my pockets, jumped on the scanner table, and got strapped in so my arms wouldn’t move.
The scanner wasn’t claustrophobic for me, and it took 41 minutes to run up my body (they start at the thighs and work their way up to the head).
When I was through, I hopped off the table, collected my things, and headed home.
I have to admit that when I walked out of the hospital, I was really surprised by how much my body and mind unwound from the apparent subconscious nervous tension I was harboring. Going into it, I didn’t seem fazed by it all. It was routine for me. Heck, I’m on a first-name basis with the nuclear medicine tech (we’ll call him Sam) because he’s done all three of my scans at the VA. But apparently my subconscious had a different experience. Oh well. Nothing a good nap won’t cure.
I asked Sam how quickly the results would be available, and he said it could be as soon as this afternoon, but within 48 hours if they’re not.
From my previous scans with Sam, I’ve learned to not even think of asking him if he saw anything of concern during the course of the scan. He resoundingly (and rightly) always answered that it’s up to the doctor to interpret and provide the results.
I’ve also come to know that, for Sam, bedside manners seem to be optional. He’s not unprofessional in any way, but he is all business and sometimes even borders on the grumpy side. As I was leaving, Sam said something in such a way that he let his tough façade down. His voice became just a hint softer as he said, “You take care now” in a caring way.
Of course, that caught my attention and got my mind racing. I’m really, really, really trying not to read too much into that and get ahead of the actual results, but he said it two more times before I left. That makes me wonder what he saw that may have changed his demeanor.
Of course, my exhausted Gallium-68-infused brain may be making all this crap up, and I may get a good laugh out of it in a day or two. Or not.
As usual, stay tuned for the next chapter in this saga. I have my appointment to go over the results on 24 March.
Late last week, I received a text message asking if I would like to move my urologist appointment from 30 December to today, 23 December, and I agreed.
My appointment was at 3:15 p.m., and I arrived around 2:45 p.m. As I’m walking up to the check-in kiosk, my cell phone rings, and it was the urology department wanting to confirm that I’d be there. That’s the first time that that’s happened, and I told the nurse that I was checking in as we spoke. “Great! We’ll come out and get you.” Apparently, they were antsy to get out of there early on the day before Christmas Eve. So was I.
The head of the department was the one who saw me this time, and we had a really good conversation. Some of the key takeaways:
She was concerned about the increase in my PSA but not panicked, even initially suggesting we just continue to monitor it.
We talked at length about doing another round of imaging to see if we can determine the location of the cancer.
We agreed to do another PSMA PET scan, and we negotiated doing one in March 2026. (She thought that Nuclear Medicine might push back on doing one sooner, i.e., within a year, as the last one I had was in March 2025.) She also mentioned the possibilities of other imaging should the PSMA PET scan come up with no evidence of cancer/metastasis for the fourth time.
We talked about the timing of starting androgen deprivation (hormone) therapy. She wouldn’t start it until there was evidence of metastasis, but was open to starting it earlier if I really wanted to do so.
Lastly, we reviewed my stress incontinence and nocturia issues and talked about my pelvic floor physical therapy.
It was one of the more thorough discussions that I’ve had at the VA, and I’m okay with the plan coming out of the meeting. I’ll go for another PSA test on 1 March; hopefully get the PSMA PET scan scheduled in early March; and have a follow-up with the urologist on 24 March.
I’m glad I got this out of the way before the holiday. I’ve got my answers, plus it frees up next week for me to go out an play if I want.
Merry Christmas, Happy New Year, and be well!
Header image:Hotel del Coronado at Christmas, Coronado, California
In a nutshell, we’re punting the ball another three months down the road.
The doctor commented on the continuing rise in my PSA and said after consulting with the doctor who saw me last time, said that he wanted to recheck my PSA in six months and “wait a year” for another PSMA PET scan. I should have asked for clarification on that, but I think he was referring to waiting a year after my last PSMA PET scan in March 2025 and not a year from today.
I wasn’t entirely comfortable with waiting another six months, so we agreed to test PSA again in December (three months after my September test) and go from there.
We also talked about spot radiation if anything pops up on the scan. He seemed a bit reluctant for that to be an option, and went straight to starting hormone therapy. It’s as though he was making the transition from curative options to management options, and, to be perfectly honest, I believe I made that transition in my own mind once the salvage radiation failed. That doesn’t mean that I wouldn’t try zapping a lesion or two if they popped up on the scan depending on location (no more zapping to the pelvis and risking further bowel complications).
We did talk about my experience with hormone therapy during the salvage radiation, and the timing of starting it this time around. In that discussion, he brought up the topic of bringing in a medical oncologist at some point depending on the scan results and my PSA test results.
We talked at length about my urinary frequency and some options for that. He suggested some pelvic floor therapy might be beneficial, so I said I’d be willing to give that a try.
Overall, I’m okay with where we’re at and the planned course of action for now. I’ll go for my PSA test in early December, and if there’s another significant jump, I’ll press for the PSMA PET scan to be done sooner rather than later.
My next scheduled urologist appointment is 30 December 2025.
I had my post-PSMA PET scan visit with the urologist today, and I wasn’t really sure what to expect going into it.
The doctor (same as last time) shared the scan results saying that they’re something I should celebrate. I mentioned, though, that I have had three scans and were inconclusive despite the rising PSA numbers. He was quick to reply by saying that the scan not showing evidence of prostate cancer or metastasis was conclusive.
I understand where he’s coming from, but until we know where the cancer is, I’m going to have a difficult time accepting that perspective.
I did ask whether there was some sort of test that can determine if my cancer doesn’t express PSMA, and he said that there wasn’t. Something in my pea-sized brain tells me I need to double check him on that.
I also asked if there could be another explanation beyond the cancer that would explain my rising PSA. He ruled out the possibility of some residual prostate tissue being left behind after the surgery as being the cause based on my PSA kinetics over time.
In terms of what’s next, we’re kicking the can six months down the road for another PSA test and follow-up. I was a bit surprised that he wanted to wait six months, and suggested doing the test in three or four months. He was a bit insistent on the six month window. He felt comfortable with my current situation—the slight increase in my last PSA test from the previous one and my PSA doubling time—that waiting six months wouldn’t be a problem. He also argued that having a longer period between tests would better reflect what’s going on.
As we wrapped up, he reminded me that the scan results were good news, and I know that he’s right in that regard. I’ll work on changing my own perspective going forward (even though those little cancer bugs are still doing their thing inside me.)
My follow-up appointment is on 30 September 2025.
That’s it for today. Be well!
Header image: Cherry Blossoms, Japanese Friendship Garden, San Diego, California
On the whole, the news is good. My PSA just barely bumped up from 0.94 ng/mL in January to 0.95 ng/mL in March and, taking the last five readings, that increased my PSA doubling time from 7.7 months to 10 months.
The PSMA PET scan revealed “no evidence of prostate cancer or metastatic disease.”
So, if the news is good, why am I “so over this?”
I was really hoping that this third PSMA PET scan would bring some clarity as to where the cancer was located so we could know how to proceed—even if it meant revealing metastatic disease. It’s frustrating because we know the cancer is somewhere and because we know the PSA almost tripled between 19 January 2024 and 16 January 2025, but we don’t have enough information to do anything about it. It’s just more waiting in limbo.
Of course, having had three PSMA PET scans all turn up negative makes me question if I’m in that “lucky” category of ten percent of patients whose prostate cancer doesn’t express PSMA, making the scans useless for me. It’s something that I’ll definitely discuss with the doctor at my next appointment on 1 April 2025. I vaguely recall that there’s some sort of genomic test that may be able to assess if I really do fall into that ten percent. I’ll have to do some research on that.
Maybe, too, I’ve placed too much faith in the scan’s ability to detect anything at my PSA level. But with a PSA level hovering around 1.0 ng/mL I thought we would have a decent chance of detecting something (chart below).
Detection Rate on a Patient Basis Stratified by PSA and Region Tr indicates prostate bed only; N1, pelvic nodes only; M1, extrapelvic only. Proportion of patients with 68Ga-PSMA-11 PET positive findings were stratified by PSA range and region of disease in accordance with PROMISE. https://pubmed.ncbi.nlm.nih.gov/30920593/
Needless to say, I’m truly glad that my PSA didn’t rocket even higher and that my scan didn’t light up like Times Square. Having definitive answers, though, would be the icing on the cake.
As far as the PSMA PET scan itself, it was pretty easy and took two hours to go through the entire process. I was instructed to drink 500 ml of water starting 2 hours before the scheduled scan time, and that was the only preparation needed.
I arrived at the hospital at 8 a.m. and was brought back to a radiation-proofed exam room where the technician started and IV at around 8:15 a.m. The 68Ga tracer was ready for injection around 8:40 a.m.
Around 9:30 a.m., the technician brought me back to the scanner where I got positioned on the bed and we began the scan which took 45 minutes. The scanner was very quiet (I could have dozed off) and large enough that it wasn’t claustrophobic. I was out of there by 10:15 a.m. and on my way home. Piece of cake.
On a related note, this was the longest it’s ever taken me to get the PSA test results posted online (hence the delay in this post). I actually called the clinic to get them over the phone because they still weren’t available online today (Thursday). The nurse I spoke with was very helpful and said, “We’re facing staffing issues and, well…” stopping herself in mid-sentence, probably remembering that the call was being recorded and not wanting to make a statement about the current environment for VA employees at the moment. I fear that this may be a precursor of things to come.
You may have overachieved when your doctor asks, “Are you a urologist?”
I had a good meeting with the real urologist this morning, and it appears that he actually read the questions I sent to him in advance. That made the discussion easier.
First on my question list was whether a PSMA PET scan was warranted. He agreed that it was, and we’re going to try to get that scheduled soon. He thought that, with my PSA at 0.94 ng/mL, there would be a better chance of actually finding something this time. The only concern is that the VA has required a bone scan ahead of the PSMA PET scan in the past, and he’s going to see if we can skip that. It may take several days for the schedulers to call me.
We did discuss the possibility of further radiation if a lesion is found away from the pelvis. I mentioned that I had had blood in my stools and mild radiation proctitis discovered (and addressed) during my recent colonoscopy. He was not keen on further radiation to the pelvis under those circumstances. Neither am I.
My next question was about the timing of beginning androgen deprivation therapy (ADT). He was pretty squishy on the timing, not knowing exactly where we’re at. I mentioned that, a year ago, the urologist told me that we’d start when my PSA hit 2.0 ng/mL, but the medical oncologist suggested holding off until metastasis. He generally agreed with the concept of starting it later so that the cancer doesn’t become resistant to it prematurely, with one caveat.
He seemed to give more weight to my PSA doubling time than did other doctors, and that’s when he asked me if I was a urologist. I had presented him my graph showing my PSA progression, and it showed my PSA doubling time. “How did you know how to calculate it?” I told him that I used the Memorial Sloan-Kettering PSA doubling time calculator. To him, my PSADT of 9 months was creeping into “concerning” territory, and might make him a little more inclined to start ADT earlier.
I asked him, “At what point do we call this metastatic disease?” and, “When should we get a medical oncologist (MO) involved?” To the first, he said that all we know is prostate cancer is somewhere in my body, but wouldn’t go so far as to call it metastatic yet. To the second, he was open to brining in a MO if the results of the PSMA PET scan warranted it.
We agreed to the following plan:
Get a PSMA PET scan and meet again in six weeks to review the results.
Get an updated PSA test before the six week review.
Let the results of the scan determine if we get the MO involved at that point.
I have the six-week follow-up appointment scheduled for 1 April 2025. My concern is getting the PSMA PET scan scheduled and completed before then. If I need a bone scan in advance of it, that may complicate or delay the PSMA PET scheduling further. If push comes to shove, I already had an appointment scheduled with urology on 8 May 2025, so that’s not that much of a delay if we can’t get everything scheduled before 1 April. 2025.
It was a productive meeting from my perspective, without any surprises.
More to come as we get things scheduled.
Header image: Cuyamaca Rancho State Park, California
I jumped the gun a couple of days and went for my PSA lab work Thursday morning on 16 January. (The three month date since the last PSA test would have been 22 January.)
As a refresher, my PSA in October was 0.69 ng/mL; it’s now 0.94 ng/mL.
I’m going to have to get a little aggressive with the medical team in terms of appointment scheduling. In October, we agreed to retest in three months and go over the results, but the schedulers didn’t have any open appointments until May 2025. Needless to say, that’s too far out so I’ll have to cajole my way into a canceled appointment or ask for a virtual / telehealth appointment sooner.
With my PSA as high as it is, I suspect that another PSMA PET scan would finally reveal some useful information that we can use to plan treatment options.
Header image: Devil’s Golf Course, Death Valley National Park, California
I met with the urologist this afternoon to go over my most recent PSA test results and the plan going forward. In a nutshell, we agreed to remain in limbo for another three months and retest the PSA in January and consider a PSMA PET scan if warranted at that point. (She was a bit skeptical that the PSMA PET scan would be conclusive even at my current PSA of 0.69 ng/mL.)
The urologist thought it was a little premature to start talking about androgen deprivation therapy, but recognized that that’s the next likely step down this path. I mentioned that, when I met with the urologist and medical oncologist in February, one suggested ADT at metastases and the other suggested starting at a PSA of 2.0 ng/mL. She said she could understand both positions.
Bottom line is that I continue to be in this sort of “no man’s land” of prostate cancer. We know it’s there; we just don’t know where, and we don’t want to pull the trigger on ADT prematurely. So more waiting.
One other thing that we discussed was radiation proctitis.
Graphic Biology Ahead
I’ve been sitting on this little tidbit for a while now, but I’ve been noticing blood in my stools. It initially appeared as spots a little smaller than a dime coin (~ 1 cm) but, over time, it has subsided to a small streak or a hint of blood. You know me: I had to create a spreadsheet to track it, and it’s been occurring in about ten percent of my bowel movements. That makes me feel better that it isn’t happening each and every time—that might indicate a larger problem if it were happening every time.
Fortunately, I haven’t had the diarrhea or mucus discharge that can come with more severe cases of radiation proctitis.
I mentioned this to my primary care physician during my appointment on 4 November, too. Both he and the urologist recommended a colonoscopy to check out what’s really going on. That joyful experience is scheduled for Friday, 22 November. Yippee!
I did come across this continuing education paper that gives a good overview if you’re really interested in learning more:
Dan's Journey through Prostate Cancer 