Tag: Cancer

Day 5,683 – Medical Oncologist Visits

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

My visits with the medical oncologists yesterday and today went well, and there was some consensus on how to proceed.

[BLUF: We’re kicking the can down the road three months.]

UCSD Oncologist

The first part of the meeting was getting the doctor up to speed on my case, as he didn’t have any of the history. Of course, nerd me came prepared with a two-page Reader’s Digest chronological summary of my diagnosis and treatment, printouts of my PSA charts, and copies of the PSA doubling time (PSA DT) calculations.

PSA Doubling Time

Because PSA DT is an important number in the decision-making process, I opened the conversation by asking him how many data points should be used in the calculations. He chuckled a bit before saying that one of the downfalls of using PSA DT is you can pick and choose the data that you want to get the answer that you want. So true.

I calculated my PSA DT using 3, 4, and 5 values and came up with different answers:

Number of values usedGoing back X monthsCalculated PSA DT
367.6 months
498.0 months
5149.2 months

He just looked at the curve on my PSA tracking chart and estimated in his head that it was around nine months. In his eyes, that six to nine month PSA DT warrants closer observation and monitoring.

Inconclusive PSMA PET scans

We discussed my four inconclusive PSMA PET scans and [F18] FDG PET scan, and whether he thought that I was PSMA negative. He thought it was unlikely that I was, offering up a case with another patient whose PSA was over 50 ng/mL and still showing up negative on PSMA PET scans.

One of the reasons that we talked about that at some length was that he suggested that Pluvicto / Lutetium-177 might be an option.

I asked about getting an Axumin scan or a Choline-11 scan, and he wasn’t in favor of doing either of those at the moment.

When to Start ADT

We also discussed when to start androgen deprivation (hormone) therapy (ADT). He didn’t have a set of specific criteria that he would use—e.g., specific PSA number, evidence of metastasis—but did focus in on the rate of PSA rise (PSA DT) and “patient motivations and preferences.”

What type of ADT

The doctor was a proponent of intermittent therapy in my case with six to twelve months on, then a similar period off. His goal would be to “maximize time off treatment” as long as my PSA is holding relatively steady and not going bonkers.

He seemed a tad hesitant to start with the combination therapy of ADT + ARPI (Eligard + Enzalutamide), but wasn’t opposed to it, either. He wasn’t a fan of trying the Enzalutamide alone because of its side effects (gynecomastia, in particular) and not seeing any substantial changes in long term outcomes.

Summary

I did share with the doctor the VA MO’s desire to start ADT + ARPI sooner rather than later, and he had a much lower sense of urgency in taking action. And, while I was a bonehead and didn’t explicitly ask him for his recommended course of action, the entire conversation led me to conclude that his preference was for continued close observation.

VA Oncologist

I technically didn’t meet with the oncologist; I met with a nurse practitioner who had reviewed my case with the oncologist just before (and during) my appointment.

Discussion

It was interesting that she opened the conversation with a quick review of my last appointment there, told me my PSA results from last week, and then said something along the lines of, “If you’re not ready to start ADT today, the doctor is okay with monitoring for another three months.”

At that point, I mentioned that I went to the UCSD MO the day before, and I spent a good chunk of time relaying how that meeting went.

I reminded her that I have the bone density scan in a few weeks and I intended to go through with that to establish a baseline even though we might not start ADT right away. She agreed.

I’m still meeting with the VA urologist on 23 June and want to get their thoughts on what’s next.

Summary

We’re going to do another PSA test in September, and the VA MO didn’t want to schedule an appointment with me until December with another PSA test just before that meeting, too. Interestingly, the VA MO also wanted to schedule a regular CT scan and bone scan ahead of the December appointment.

However, if the September PSA test jumps up significantly, we’ll revisit that plan based on the results. That may change doing the CT/Bone scans to another PSMA PET scan.

The Plan

In short, we’re going to kick the can down the road another three months.

More specifically:

  • Bone density scan – 17 June
  • Urologist appointment – 23 June
  • PSA test – First week of September
  • CT and Bone scan – First week of December
  • PSA test – First week of December
  • VA Oncology Appointment – 8 December

Summary

On the whole, I’m pleased with the plan as it stands right now. The UCSD MO emphasized the shared decision-making approach, adding in his notes, “Daniel is very well educated about his illness and understands there is no clearcut right and wrong answer.” Ain’t that the truth (about the no right or wrong answer).

Once I cleared the hurdles of getting set up in the UCSD system, I was impressed by the friendliness and professionalism of their staff in the department. They have a patient portal app that allows access to records and makes communicating about appointments—in both directions—quite easy.

One thing that I’ve noticed with both the VA and UCSD oncology departments is that their empathy and caring nature seems to be a notch or two above that of their respective urology departments. Not that the urology teams aren’t caring or empathetic; it’s just that the oncology folks seem to take it a step further.

I know the VA MO expressed a desire to take the lead on my case at my last appointment, and I’ll mention that to the urologist on the 23rd. And, for now, as pleasant as the experience at UCSD was, I plan on having the VA be my primary source of care.

More to come.

Be well!

Header image: Sunset, Imperial Beach, California

Day 5,677 – PSA Results

On By DanIn Hormone Therapy, Prostate Cancer1 Comment

I went for my PSA test this morning and already have the results this afternoon (a pleasant surprise).

My PSA increased, but not as much as I expected it to. It went from 2.52 ng/mL in March to 2.65 ng/mL today.

If I use the last five PSA values to calculate PSA doubling time going back 14 months, my PSA DT is 9.2 months. If I use the last four PSA values going back only nine months, it’s 8.0 months. Again, the VA medical oncologist used the nine month PSA DT one of the triggers to start hormone therapy.

Armed with these latest results, I should be ready for my upcoming appointments:

Monday, 1 June – UCSD Medical oncologist

Tuesday, 2 June – VA Medical oncologist

Wednesday, 17 June – Bone density scan to establish baseline

Tuesday, 23 June – VA Urologist

I definitely plan on asking the UCSD MO what his thoughts are on an Axumin scan, and whether it’s worth pursuing before we start hormone therapy. If he agrees, I’ll have to add that to the schedule, too.

I also had another testosterone test done to establish a baseline should I opt to start hormone therapy. It came in at 416 ng/dL (reference range 200-800 ng/dL).

Over the holiday weekend, UCSD sent an automated email asking me to complete their electronic check-in process. Sheesh. It took more than an hour of filling out forms, providing history, and updating insurance. The only thing they didn’t ask for was our family cat’s name from when I was five years old. Hopefully, getting all that taken care of in advance makes the appointment go more smoothly.

More to come. Be well!

Header image: Lake Sara, Effingham, Illnois

Day 5,665 – UCSD Appointment

On By DanIn Hormone Therapy, imaging, Prostate CancerLeave a comment

Finally. Things have fallen into place when it comes to getting my second opinion with the UCSD medical oncologist.

The scheduler called this morning and the first available appointment was Monday, 1 June, so I took it. That works out great because I’ll have brand new PSA test results from the week before, and I’m scheduled to see the VA medical oncologist the next day on Tuesday, 2 June.

The only potential hiccup in making this happen is getting my records from the VA to UCSD. The scheduler said it could take a week or two to make that happen, and that’s pushing it. I’ll try to grease the skids on the VA side if I can.

The two main lines of questioning that I’ll have for the UCSD MO are:

  1. Do the negative PSMA and FDG PET scans warrant an Axumin scan in an effort to see where the cancer is?
  2. What is your recommendation for when to start ADT and what type of ADT treatment I should be on? Single? Double?

I’m sure I’ll come up with more questions between now and then. I also won’t tell him what the VA MO’s plan is to make sure I get his unbiased opinion first. Once he lets me know his thoughts, I’ll him know they want to start me on Eligard and Enzalutamide.

Fingers crossed that the records get transferred in time.

Have a great weekend!

Be well!

Header image: Anza-Borrego Desert, California

Month 186 – What a Month

On By DanIn Hormone Therapy, Incontinence, Prostate Cancer, RecurrenceLeave a comment

We last left our hero with the beginning of a head cold after his scan and oncologist meeting. And, boy, what a head cold that turned out to be.

Normally, a typical head cold lasts a week or so and you’re back to normal. Not this time. This was the most stubborn virus, hanging on for three weeks and change. It was ugly. So ugly, in fact, that I went to the doctor for help.

The cold started out with a light fever and lots and lots of coughing. Of course, when you have your prostate plucked from your pelvis and they zap what’s left, stress incontinence is an issue. If I have a light cough, I’m generally okay, but with this virus, I was having deep coughs where it seemed as though I was trying to turn my lungs inside out. I had to switch to the heavy-duty incontinence pads and, even then, I blew out two of them with coughing fits, leaking into my underwear and jeans. Messy and not fun.

The doctor gave me something to calm the dry coughs, and that had a bit of a positive effect. But then my sinuses filled, my nose was running, and I was coughing up phlegm so I switched to something else to deal with that.

Long story shorter, it’s pretty much all behind me now, and that’s a good thing. Maybe I’ll go back to the COVID days and wear masks when riding packed transit or wandering the halls of hospitals.

While I was down for the count, I had plenty of time to dig into more about androgen deprivation therapy (ADT), its pros and cons, and the timing of starting it. Sadly, I could find information that supported pretty much any perspective you wanted, which really isn’t all that helpful.

On the whole, it appears the current thinking is to start ADT sooner rather than later, and to use a doublet therapy, i.e., ADT + ARPI. This seems to delay time to metastasis, but has the obvious cost of substantial side effects.

On a related note, I called UCSD on 30 April to set up a second opinion appointment with the medical oncologist that’s well-respected and that the VA called to consult on my case two years ago. Because I was already in their system, that helped a little. I had to update my insurance information, and they said they’d get back to me in 2-3 business days. They didn’t, so I called back today, 11 May. They put me on the “high priority” call-back list this afternoon to be called back “between now and 48 hours.” Okie-dokie. And they say scheduling appointments at the VA is difficult…

I’ve got a number of appointments coming up at the end of May and into June:

27 May – PSA Test and other pre-ADT labs ordered by the oncologist

2 June – Meeting with VA medical oncologist

17 June – Dexa Scan bone density scan for baseline

23 June – Meeting with VA urologist

With luck, I’ll be able to add the UCSD medical oncologist to that list as well.

I really want the PSA test results—specifically, the PSA doubling time—to be a guide into what happens next and when.

One of the other things that I dug into a bit when I was down with the cold was how many values to use when calculating PSADT. As expected, there were dozens of different answers. Grr. My pea-sized engineer’s brain decided that I’ll use the last four PSA values if they cover at least a year. To me, that would render more useful information that shows the latest trend versus loading in all data points that may skew the results to show something less aggressive. But what do I know?

Using the Memorial Sloan-Kettering PSADT calculator and four data points over the last year, my PSADT is 8.9 months. Using a second calculator I found, it’s 8.21 months. For grins and giggles, I plugged in the last two years worth of data, and my PSADT was 10.4 months. Doing my research on ADT, PSADTs in the 6-9 month range seemed to be a trigger for action.

My PSA in March was 2.52 ng/mL, and I suspect it will be approaching 3.0 ng/mL at the end of May.

Obviously, this summer will be a series of data collection, evaluation, and big decision-making. Yippee! <sarcasm font>

Stay tuned for more.

Be well!

Header image: Torrey Pines State Beach, California

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

Video: “Playing the Long Game” – Does your Recurrent/Advanced Prostate Cancer Need Treating? NCI Seminar

On By DanIn Hormone Therapy, Prostate Cancer, Recurrence, TreatmentLeave a comment

One of the best things about keeping this blog going over the years is learning new information from you, the readers.

Recently, a reader left a link to this video in the comments of one of my recent posts. It highlights the work that two doctors from the National Cancer Institute (NCI) have been doing when it comes to assessing whether and/or when to treat patients with recurrent/advanced prostate cancer.

The video is about an hour long (I changed the playback speed to 1.25x to get through it a little faster) and was very timely for my current situation.

One of the interesting parts was the discussion on how to define metastatic prostate cancer. It’s still pretty squishy if you ask me.

It will be interesting to see what the oncologist says tomorrow.

Be well!

Header image: Anza-Borrego Desert, California

Day 5,623 – FDG 18 PET Scan

On By DanIn imaging, Prostate Cancer, Recurrence2 Comments

Well, that was a surprise at 3 p.m. on Good Friday afternoon.

A resident from the urology department called to let me know that she had reviewed my email with the original urologist and, after consulting with the nuclear medicine department, they came to the conclusion that I made a strong case for me getting an alternate scan.

Unfortunately, the VA doesn’t offer the Axumin scans, but they do offer Fludeoxyglucose F18 (FDG) PET scans which are also reliant on PSMA for the ligand to attach itself to.

She said that the F18 ligand interacts differently than the 68-gallium does, so it’s possible that it will attach to the PSMA molecules on the cancer cells. (In a prostate cancer forum, one patient was in a similar situation. The 68-gallium scans didn’t work for him, but a Pylarify PSMA PET scan did.)

I know from earlier reading that F18 FDG scans aren’t as sensitive and may not work best in a recurrent cancer situation, but they definitely won’t pick anything up if we don’t do them. She offered to put the order in to do one, and I said yes.

I’ll give nuclear medicine a few days next week to receive and process the order before calling them to schedule the scan.

I thanked the doctor at the end of the call and she, in turn, thanked me for advocating for myself.

I’ll post more when the date is scheduled, and I’ll be putting my list of questions together for the medical oncologist appointment on 14 April.

Be well!

A little reading: Is There Utility for FDG PET in Prostate Cancer?

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 5,615 – Doctor Call

On By DanIn imaging, Prostate Cancer, RecurrenceLeave a comment

As I was driving to the barber to get my hair cut (both of them), my phone rang. Normally, I avoid phone conversations when I’m driving—even the hands-free, Bluetooth variety—but when the Caller ID popped up on the infotainment screen as being the VA Medical Center, I answered because I thought it might be the Oncology scheduler calling to set up an appointment.

Instead, the call was from the urologist I met on Tuesday to talk about his research and efforts to pursue an Axumin scan. (I sent an email to him yesterday saying that I did a little legwork for him and learned that UCSD still does Axumin PET scans in case the VA didn’t.)

In a nutshell, he contacted the VA nuclear medicine department and, according to him, they were very elusive with him in saying whether they even had the ability to do the scan at the VA and, even if they did, if they would do it considering the PSMA PET scans have replaced it in their minds.

Then the doctor again put his faith in the PSMA PET scan and thought that the Axumin scan wouldn’t provide any useful information. He also mentioned that he looked at the 10% of patients not having PSMA protein and said, from his quick research, it seemed to only been identified in a single study. Unfortunately, that was said at a time when I was more focused on driving than listening, and I’m sure I didn’t fully understand what he was trying to convey.

I was finally able to safely park and give 100% of my attention to the conversation, and he said one other thing that puzzled me. He seemed confident that, because my PSA was rising, I did, in fact, have the PSMA protein. I’m not sure that I agree with that and need to do some digging.

We did talk about having a Pylarify PSMA PET scan which uses a different tracer than the 68-Ga-PSMA-11 PET scans. He thought that that could be a possibility, but wasn’t sure that the VA offered it yet. He knew it had been FDA-approved, but thought that the VA hadn’t developed the protocols for its use yet. I mentioned that when I spoke with UCSD yesterday, they said they had the ability to do Pylarify scans, too.

I asked him about how I might get a referral from him/the VA for me to get the scan on my own, and he thought that there may be a number of bureaucratic hoops to jump through to make that happen, including determining if something was “medically necessary.” He wasn’t exactly sure of the process, especially if I was going to use my own insurance (Medicare).

I just wanted him to confirm that, in his view, there was value in getting a scan to learn the location of the cancer and what it’s doing. He agreed.

I told him that my goal was to find the cancer and, if there were one or two lesions, to do spot radiation to knock them down if they’re in a suitable zapping location. That may help delay the start of ADT. (Or not. I’m not sure if they put patients on ADT when going after oligometastatic lesions.)

Finally, he did ask if I had been scheduled with the oncologist yet, and I have not. He was interested in hearing what they had to say about scans.

Needless to say, the waters have been muddied and I’m a little less confident that I know what’s going to happen next.

I’ll send him an email in the morning recapping our conversation, with an emphasis on his agreement that having a scan at this point is important. Translation: Medical necessity. I’ll also let him know that I’m open to trying any scan that he thinks will work.

I may also ask him to explain again why he is convinced that I have the PSMA protein and why he’s skeptical of the 10% number.

I’ll also try to connect with the oncology schedulers and get that appointment on the books.

I may also look at what it takes to get myself in as a patient at UCSD through either their urology or medical oncology departments. Because UCSD did my salvage radiation therapy in 2022, I may still be in their system, so it may be less difficult than starting from scratch. I’ll have to figure out how to share my VA health records with UCSD if needed.

The saga goes on…

Be well.

Header image: Anza-Borrego Desert, California