Tag: health

Day 5,635 – Unexpected Call

On By DanIn Hormone Therapy, Prostate Cancer, Recurrence, Treatment4 Comments

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.

Be well!

Header image: Anza-Borrego Desert, California

Month 185 – Scan Results & Oncologist Meeting

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Recurrence, Treatment7 Comments

It’s been a busy two days hanging out at the doctor’s offices between the scan and the oncologist. Here’s a summary of each, my final thoughts, and a quick explainer about hormone therapy for the uninitiated at the end.

18F-FDG PET Scan

“No evidence of metabolically active malignancy or metastatic disease.”

Well, I hate to say it, but I’m not necessarily surprised by that result. I didn’t have high hopes of getting a definitive answer going into the scan given its lower sensitivity and lower specificity, but I thought it was definitely worth the effort.

As far as the procedure itself was concerned, it was slightly different than the 68Ga-PSMA-11 PET scan. I had to fast for at least 6 hours (no food, just water) before the injection of the 18F-FDG tracer. They also had to measure my blood glucose level to ensure it was under 200 mg/dL (it was). If it was over, the scan would have been canceled.

There was a one-hour waiting period for the tracer to distribute through my body, and the scan itself took 45 minutes. Seeing as I had to get up at 4:30 a.m. for my 7 a.m. appointment, that hour in the recliner was much needed.

Oncologist

I actually met with two medical oncologists this morning, the resident about to complete his training (MO Jr.) and the full-blown MO Sr. who focuses on prostate and breast cancer. It was a good, nearly hour-long discussion. In a nutshell:

  • It was disappointing that the imaging didn’t show anything and, even though it would be nice to know where the cancer is located, MO Sr. felt it was time to start systemic treatment.
  • MO Sr.’s triggers for starting hormone therapy were a PSA greater than 2.0 ng/mL (I’m at 2.52) and a PSA doubling time less than 9 months (I’m at 8.9 months).
  • MO Sr. said that, with my numbers, I’m at “higher risk” for this to get away from us and metastasize.
  • MO Jr. said that the window for curative options has closed and that treatment going forward would be “palliative.” (I already knew that curative options were out the window.)
  • Both agreed it’s time for them (Oncology) to take the lead on my case at this point, with Urology still available in a supporting role.
  • Both suggested dual therapy involving androgen deprivation therapy (ADT) using Eligard (leuprolide acetate) and and androgen receptor pathway inhibitor (ARPI) using Xtandi (enzalutamide) as the current standard of care. [See explanation below if you’re unfamiliar.]
  • MO Sr. also suggested intermittent therapy over continuous therapy, using a 9-month schedule to start.

If she had her way, I believe MO Sr. would have had me start the therapy in the next week or so. I tapped on the brakes on that idea. I told her that Urology wanted another PSA test done in early June, and I thought it would be good to get that done before starting anything. Also, I’m traveling in May and I simply wanted to postpone anything until after I return. Six weeks won’t make that much of a difference.

We agreed, in concept, to the following:

  • No more scans to try to located the cancer for now.
  • Get pre-therapy lab work done the week after Memorial Day to establish baseline testosterone and PSA levels (among others) ahead of therapy.
  • Get a Dexa bone density scan to get a baseline prior to starting treatment (extended ADT can weaken bone density).
  • Meet on 2 June to review the results and make the final decision as to whether to start treatment.

Final Thoughts

It’s only been a few hours since the meeting, and I’m still trying to absorb it all and process it. Of course, after 15+ years of dealing with this, I knew we would eventually get to this point. Am I ready or willing to take the advice of the National Cancer Institute doctors in the video I shared recently to just monitor and delay treatment? I don’t know. It’s something that I’ll have to contemplate over the next six weeks or so.

I will say that I was pretty impressed with the Oncology Department as a whole. You’re assigned a care coordinator and given their direct phone number for all questions or concerns, and both doctors were good at listening and engaging in a real conversation. It seemed like they were a bit more empathetic over all, and that’s a good thing.

Certainly a lot to take in in the days and weeks ahead. I’m open to thoughts and feedback.

Be well!

—Dan

Hormone Therapy Explained

For those who aren’t really familiar with how prostate cancer works and what role hormone therapy plays, here’s a grossly over-simplified explainer.

Prostate cancer feeds off of testosterone and, as long as there’s a supply of testosterone, the cancer will continue to grow.

There are two ways to deprive the cancer of testosterone. The first is to stop or slow the production of testosterone. The second is to block the cancer cells from receiving the testosterone. The current standard of care is to use both methods simultaneously.

Let’s say the cancer cells are in the bottom of your favorite travel mug, thirsty for testosterone. If you put the mug under running water from your tap, the cells get the water (testosterone) they need and the cancer grows. But if you turn the tap off, the water (testosterone) stops flowing, and the cells in the bottom of the mug can’t grow. This is called androgen deprivation therapy (ADT).

The other way to stop the cancer cells in the bottom of the mug from getting water (testosterone), is to simply put the lid on and block the water from entering the mug. This is called androgen receptor pathway inhibitors (ARPI).

If you do both simultaneously, you can really slow the growth of the cancer. But we also know that some taps have slow leaks that drip water and, if the lid is slightly open, water (testosterone) and still make it to the cancer cells inside the mug.

There are two ways of turning the tap off. One, an orchiectomy, is a radical, surgical and permanent removal of the testes. But the adrenal glands also produce a small amount of testosterone, too, so the flow isn’t completely stopped.

The other is to use an ADT drug to have the brain tell the testes to stop producing testosterone. The drug is given via an injection in typically one, three, or six month doses, and it has significant side effects: hot flashes, mood swings, fatigue, loss of libido, loss of muscle strength, and loss of bone density, to name a few.

The way to put a lid on the mug is through an ARPI drug that’s usually taken in pill form daily. In my case, MO Sr. was recommending Xtandi (enzalutamide) as the ARPI. It has its own host of side effects: muscle and joint pain, fatigue, falls and bone fractures, headaches, high blood pressure and others.

The good news is that this combined treatment option can keep the cancer at bay for years (as long as you stay on it for years). However, at some point, the cancer can become resistant to the drugs, and you may have to move to stronger treatment options like chemotherapy.

Again, this is an oversimplification for those new to the topic.

Header image: Anza-Borrego Desert, California

Day 5,616 – Ugh.

On By DanIn imaging, Prostate Cancer, Treatment1 Comment

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:

The clinical characteristics of patients with primary non‐prostate‐specific membrane antigen‐expressing prostate cancer on preoperative positron emission tomography/computed tomograph

Finding Metastatic Prostate Cancer that Doesn’t Make PSMA

The Blind Spot of Prostate-Specific Membrane Antigen Positron Emission Tomography Staging? Intraductal Carcinoma of the Prostate Is Overrepresented in Patients With No Uptake Pattern on Prostate-Specific Membrane Antigen Positron Emission Tomography and High-Grade Prostate Cancer

The oncological characteristics of non-prostate-specific membrane antigen (PSMA)-expressing primary prostate cancer on preoperative PSMA positron emission tomography/computed tomography

Normal Variants, Pitfalls, and Artifacts in Ga-68 Prostate Specific Membrane Antigen (PSMA) PET/CT Imaging

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:

  1. Write the urologist and let him know that I came away from our phone call with a completely different take.
  2. 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.
  3. 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:

  1. 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.
  2. Try to set up an appointment with the medical oncologist that the VA consulted when we talked two years ago.
  3. 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?

Be well.

Header image: Anza-Borrego Desert, California

Day 5,593 ½ – Scan No. 4 Completed

On By DanIn imaging, Prostate CancerLeave a comment

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.

Be well!

Header image: Anza-Borrego Desert, California

Day 5,522 – Urologist Appointment

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Treatment9 Comments

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

Month 179 – Urologist Discussion

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Radiation Therapy1 Comment

Well, that went about as I expected.

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.

Be well!

Header image: Sunset, Imperial Beach, California

Day 5,256 – Doctor Visit

On By DanIn imaging, Prostate Cancer7 Comments

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

Day 5,237 – PSA and PSMA PET Scan Results

On By DanIn imaging, Prostate Cancer8 Comments

I’m so over this.

Click to enlarge

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.

Be well!

Day 5,214 – Doctor Visit

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Radiation Therapy1 Comment

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

Month 171– Preparing

On By DanIn Prostate Cancer2 Comments

In preparation for next week’s appointment with the urologist, I’ve put together a list of questions to bring with me. I’ve also done something new: I’ve emailed the questions to the office in advance of the meeting to hopefully make the most out of the time we have together. That, of course, assumes that the doctor will actually see the questions more than five minutes before walking into the exam room. We’ll see if it pays off.

I’ve also been preparing on another front, too.

As many of you already know, I have been receiving my care through the Veterans Affairs (VA) healthcare system since 2013. Of course, the VA is a government agency, and I’m growing increasingly concerned about this new administration’s slash-and-burn attacks on multiple government agencies all in the name of cost savings and “efficiency.” 1

The funding freeze that was put in place initially stopped hiring at the already understaffed VA, but enough people spoke out and exemptions for hiring certain key positions were allowed. I’ve also heard that the administration wants to review eligibility requirements for veterans to be able to receive care. This is of particular concern to me.

Veterans seeking healthcare through the VA are assigned to one of eight priority groups to be eligible for care. Priority Group 1 in the highest for combat veterans with service-connected injuries and disabilities; Priority Group 8 is the lowest group for eligibility. My time in the Persian Gulf for Operation Desert Shield earned me a place in Priority Group 6, more towards the lower end of the priority groups, perhaps making me more vulnerable to losing care should the administration change eligibility requirements.

Another proposal under consideration (and has been for years by some), is the privatization of VA healthcare. In other words, the administration would prefer to push 9.1 million veterans receiving care into the private, already overburdened, for-profit healthcare system. You know the one. It’s where insurance claim denial rates are approaching 30% or higher at some companies, and where an insurance company CEO was assassinated on the streets by someone disgruntled by the health insurance business (absolutely not condoning that egregious action).

Another concern is this administration’s assault on the LGBTQ community. We’ve seen the new secretary of defense ban one group from the community from serving, and it is within the realm of possibility that they could expand that ban to the entire community at some point in the future. Perhaps it would be expanded to the VA, too, and that would be another possible reason for me to lose my care. (The VA knows I’m gay.)

Given how quickly and how erratically things are moving, I’ve taken a few steps in preparation for possible loss of my VA healthcare. I’ve refilled my prescription early and I’ve downloaded my entire healthcare record—all 914 pages—before a certain billionaire’s hackers gain access to the VA computer systems and lock people out, as we’ve already seen happen at other agencies.

Am I overreacting? Who knows. We’re in tumultuous, uncertain times that none of us have ever seen the likes of before.

What I do know is that this draft-dodging president has disparaged and disrespected service members and veterans for a very long time, calling us “suckers” and “losers.” If he’s already cut off aid to starving children around the world by killing the US Agency for International Development (USAID), I wouldn’t put it past him to cut off healthcare to those of us he considers “losers.”

Please don’t say, “Oh, that could never happen.” They’re already looking at reducing veteran disability payments as a cost savings measure. Sadly, the majority party in Congress doesn’t have a single vertebra between its 53 senators and 218 representatives to stand up to the administration.

On the off chance that I do lose my VA healthcare, I do have Medicare to fall back on. But the administration has also set its “efficiency” sights on paring that down, too. Then there’s their long-standing desire to repeal the Affordable Care Act (Obamacare) without anything more than a concept of a replacement plan. (The ACA made it mandatory that pre-existing conditions be covered, an important consideration for cancer patients.)

Again, am I overreacting? Probably. But I do want to be prepared should the unthinkable happen and I lose my VA healthcare. If my preparations are for naught and I look silly, so be it. It wouldn’t be the first time. But I’m at an important juncture in my cancer journey, and I would want to make the transition to a new healthcare team as seamless as possible if I’m forced to do so. (Of course, I would dread the prospect of having to find a new primary care physician and urological oncology team from scratch. That could take months.)

We’re in crazy times. Let’s hope that reason takes over, calmer heads prevail, and that I’m wrong about all of this.

1 – Yes, there is waste in every government agency, including the VA, but there’s a right way and a wrong way to find and eliminate it. You don’t shut down the entire agency; you do a line-by-line audit of the budget and practices to see where the waste is. You also need to look at the downstream impacts before you eliminate the waste (e.g., U.S. farmers sold $2 billion in agricultural products per year to USAID to feed others around the world; now that market and that income for those American farmers is gone). Lastly, just because you don’t agree with a program that Congress appropriated funds for, doesn’t mean it’s waste or fraud.