Day 4,039 – PSMA PET Scan Completed

It’s over. The photos for my holiday cards are taken and ready to be processed. Look for a Christmas card with a cross section of my pelvis coming to you soon!

I had my 68Ga PSMA-11 PET and CT scans yesterday. In short, all went well but the technician couldn’t (or wouldn’t) tell me if the scan lit up like the Rockefeller Center Christmas tree. She said that images had to be processed first, and that she wasn’t trained to interpret them anyway. The doctors would have to do that in 1-2 business days.

The whole process took just under four hours—from the time I left my car in the parking garage to the time I got back in it.

The Process

Arrival

I checked into the Department of Nuclear Medicine about 40 minutes before my scheduled appointment (I was told 7 a.m. by the booking representative), and was told that my appointment was actually at 7:45 a.m. Oh well. It gave us a little time to complete the necessary paperwork and payment.

You’ll have several forms to complete, mostly asking about your current health status and history. Pretty easy. Just check the boxes and sign. You’ll also get one of those plastic wristbands with all of your information on it placed on your wrist. Mine initial band had my wrong birthday on it, so we had to have that corrected and a new wristband printed.

If you’re like me and your paying for it out of pocket, this is also where they’ll ask for your credit card (no cash or check) and charge the $3,300 fee.

Preparations

After you’re checked in, they’ll let the staff know that you’re there ready to begin the preparation process.

In the preparation room, the technician will insert an IV catheter into your arm that will be used to inject the 68Ga tracer and iodine contrast. As he does this, he’ll go through a very thorough explanation of what to expect once the scans begin.

He will also prepare another contrast that you take orally. It’s about 1 to 1.25 liters of a slightly yucky-tasting solution that you have to consume over the course of 45 minutes. They’ll also want you to reserve about 6 to 8 ounces of the fluid to gulp down just before you go in the scan. They want to have it in your stomach and not your intestinal tract. But you can’t start ingesting any of this until the 68Ga tracer is injected into your arm.

I believe that they actually manufacture the tracer on the spot for each patient. This is because, with its relatively short half-life, they can’t have it sitting around on a shelf waiting to be used.

When he returned with the 68Ga tracer, it was in this cute little container that I’m guessing was lead-lined to contain the radiation. He connected it to the IV catheter, juiced me up, and instructed me to start drinking the solution.

The last thing that he did was give me a little, “This guy is radioactive,” card to show to the authorities should I happen to set off sensors at airport or border security check points. Thankfully, I drove, so it wasn’t a concern for me.

That whole process took a little over an hour.

The Scans

Once you’re primed and ready to go, they’ll take you to the scanning room but they’ll ask you to stop by the toilet to empty your bladder first.

Interestingly the only articles of clothing that I had to remove were my shoes and jeans. Actually, they gave me the option of just pulling my jeans down below my knees or wearing a pair of hospital-provided pajama bottoms. I opted for comfort and the pajama bottoms.

They’ll place you on your back on the scanner bed and place a little cushion under your knees to make you feel a little more comfortable and, I suppose, to help better position you for the scan. You’ll raise both arms over your head and you’ll have to keep them there throughout the scan.

They’ll use your IV catheter to inject some iodine as a contrast. For me, the last time I had a CT scan and they injected the iodine, I became rather nauseated and told this technician about that incident.

She told me that they inject the contrast at a much slower rate than what’s used for a normal CT, and that should lessen the effects of the nausea. Even so, for insurance purposes, we put a little bib around my neck and a towel on my left shoulder just in case. “Try not to move your body if you do vomit.” Yeah, right. Good luck with that. Fortunately, she was right about the slower injection rate. The feeling was there briefly, but much less intense that before.

They’ll start with the PET scan first while the 68Ga tracer is still pretty strong, and it probably took about 25-35 minutes (I couldn’t see a clock for reference). Your only task is to stay completely still throughout. At the very beginning, you’ll be asked twice to inhale and hold your breath for about 10 seconds. After that, you just lay there, close your eyes, and enjoy the ride. (The scanning machine is nearly silent.)

Once the PET scan is done, they’ll send you off to the toilet once again to empty your bladder before the CT scan.

You’ll get back in position onto the scanner bed just as before—knees propped up and arms above the head—and they’ll begin the CT scan. The technician said it would take 8 minutes, but it seemed closer to 15 minutes to me.

When you’re done with the CT scan, you’re done. You get dressed and head home—I didn’t have to stop at the reception desk afterwards. They will tell you, however, to drink lots of fluids (preferably water) to flush the contrasts from your system.

They will forward the results to the physician who ordered the scan.

Effects

Aside from a slight metallic taste in my mouth and being really hungry after fasting in advance of the scans, I felt fine leaving the hospital. My shoulders were a little sore from holding my arms above my head for an hour or so, and that was about it.

When I arrived home, though, it all caught up with me. I was spent.

During the whole process, I felt very calm and relaxed, so I didn’t think it was stress-related fatigue, but I guess our subconscious can play games with us. It may have had something to do with waking up at 4 a.m. and not being able to fall back asleep, too. Or a combination of all of the above. Regardless, I just crashed on the sofa and took a nap.

One other thing that happened yesterday afternoon was that I had a bunch of gremlins doing a jig in my stomach that caused me to run to the toilet half a dozen or so times. (TMI, I know.) Whether it was related to the contrasts or the hot giardiniera peppers I had on my Italian beef sandwich at lunch, I don’t know. Needless to say, it wasn’t anticipated either way. I’m better this morning, with a few lingering grumbles going on down there.

Logistics

Scheduling

Regular readers already know the hassle I went through trying to get San Diego VA Medical Center to talk with UCLA Department of Nuclear Medicine, so I won’t rehash that here. Needless to say, be persistent if you encounter similar issues.

I did find it interesting that the scheduler told me my appointment was at 7 a.m. when it was actually at 7:45 a.m. I’m not sure how or where that disconnect came into play.

Lodging

Because my appointment was so early in the morning, I opted to drive from San Diego to Los Angeles the afternoon before and stay in a nearby hotel to the tune of $216. Apparently, UCLA has its own hotel at the convention center, but the price would be about the same, if not more.

Location

Obviously, UCLA is a huge campus and I wished that the scheduling office provided more information about where the building was, where to park, and where the Nuclear Medicine department was located when they set the appointment. They provided nothing until I asked.

They are located at 200 Medical Plaza Driveway Suite B114, Los Angeles, CA 90095.

When you pull in from Westwood Blvd. to Medical Plaza Driveway, you’ll turn right but will want to be in the left lane to enter the parking garage (red arrows below).

Entrance to parking garage from Westwood Blvd (red line) and walk inside the building from the lobby to the North Elevators (blue line). Photo from Google Maps.
Entrance to parking garage (red arrow) and walk along the front of the building (inside) from the lobby to the North Elevators. Photo from Google Maps.

Once you’re in the parking garage, you can take the elevators on the west side of the building up to the lobby. You’ll walk all the way across the lobby and follow the signs for the North Elevators (blue line above). Take the North Elevators down to Level B1 and the Nuclear Medicine department is right off the elevators in Suite B114.

Parking is $14 per day and, no, they won’t validate your parking ticket even after spending $3,300.

Final Thoughts

First, the staff in the Nuclear Medicine department were amazingly friendly and caring. It made the whole experience all that much better.

Second, I’ll have to admit that I second-guessed myself in wanting to have to get this done after the insurance company denied the payment. Not because of the cost (although it’s not insignificant), but because I knew from my own research that the 68Ga PSMA-11 PET scans are better at picking up the location of the cancer when the PSA level is 1.0 ng/ml (the insurance company threshold), than at my 0.22 ng/ml PSA level. Am I wasting $3,300 on a crap shoot? We’ll soon find out.

Finally, there’s the, “If you can’t stand the answer, don’t ask the question,” factor in play here. If the scan wasn’t a crap shoot and does, in fact, reveal the location of the cancer, the pressure to act (i.e., salvage radiation) goes up by an order of magnitude. As you already know, I’ve been trying to dodge the short and long-term toxicities of salvage radiation for quite some time now, and my preference would be to continue to do that for as long as I can. There will be more research and decisions in the days and weeks ahead, that’s for certain.

Let’s just hope that getting the results from UCLA to VA San Diego won’t be as difficult as getting them to talk to each other in the first place.

Happy December! Be well!

Cover photo from Google Maps

Day 4,037 – Insurance Rationale

Over the weekend, I received a letter from my health insurance company explaining the denial of covering the cost of the PSMA PET scan. This differs from what the representative told me via email (UCLA didn’t send all of the necessary paperwork) and carries far more weight, as it appears that a medical review was done. The redacted section below is the name of my insurance provider.

In a nutshell, because my PSA is 0.22 ng/ml, it doesn’t reach their threshold of 1.0 ng/ml, they deem the scan “not medically necessary” and won’t cover the cost.

The insurance company may have a limited point in their comment, “Use of this study would [not] improve the outcome” with my PSA level being so low. Realistically, the chances of the cancer metastasizing while waiting for the PSA to go from 0.22 to 1.0 are miniscule—especially with my PSA doubling time—and the treatment options would likely be the same: Salvage radiation, perhaps with hormone therapy as well.

However, the insurance company is missing the larger point: The whole purpose of having highly sensitive, highly specific scans like 68-Ga PSMA PET is to locate cancer early so that you can come up with an effective treatment plan that hopefully does, in fact, have a positive impact on the outcome and survival.

My urologists were supportive of getting the scan, so I’ll see if I can’t get them to help convince my insurance company through a formal appeal that this is, in fact, medically necessary.


As far as the scan itself, it’s less than 24 hours away. UCLA Department of Nuclear Medicine did remind me that I have to fast for at least six hours prior to the scan, drinking only water. No juice, no coffee, just water.

I’ll let you know how it went.

Be well!

Day 4,034 – Insurance Challenges

The administrative challenges continue…

On Tuesday, UCLA called to confirm my PSMA PET scan next week and, during the call, the said that they had not yet heard from my health insurance company as to whether or not they would cover the cost of the scan. She asked if I wanted to proceed next week, paying the $3,300 myself, or delay until the insurance was settled. If I delayed, the next available appointment would be in February 2022.

I told her to keep next week’s appointment and that I would battle it out with the insurance company after the fact.

On Wednesday, UCLA calls saying that my insurance had denied the request for the scan and wouldn’t cover the cost. Again, I reiterated that I would keep the appointment and pay the cost myself.

But I was curious about the reason for my denial, as I had an email from my health insurance company earlier in the year indicating the values that they would pay for each of the CPT codes that were given for the scan, so I emailed them again (after trying to get through on the phone on the day before Thanksgiving failed).

I was actually surprised that I received a response this morning that read:

I accessed your account and I see that the pre-approval was denied because of insufficient medical records was [sic] provided from the provider. I request you to please ask the provider to call…and verify the documents needed to submit for prior authorization then send the documents so that we can approve it.

Of course, UCLA is closed for the holiday weekend today, and I’ll have to just try to get them to get this taken care of on Monday when I go up there.

It’s always something.

Be well.

Yosemite National Park

If anyone’s interested, here’s my post on my trip to Yosemite National Park last week. Enjoy!

Travelin' Dan

My first trip to Yosemite National Park was, like so many of my trips, a spontaneous one, and it had the potential to not turn out well at all. But it didn’t.

I was in the Navy and had shipped my relatively new Nissan 200SX from Honolulu to Oakland, California in as part of my latest transfer to a new command. My plan was to pick up my car and drive it to Chicago and leave it with my parents before heading off to spend a year on Diego Garcia in the British Indian Ocean Territory. The kicker was that I picked up my car on 23 December 1985, and the thought of driving a little two-door coupe with Hawaii license plates across the Sierra Nevada and Rocky Mountains in the dead of winter was a tad disconcerting.

A college friend (you know who you are—thanks!) let me crash in…

View original post 1,832 more words

Eleven Years

It was eleven years ago today that I received my diagnosis and began this little adventure, and I’m glad that, eleven years later, I’m still here to write about it. Of course, the fact that I’d be writing about it eleven years later never even crossed my mind when I started this little ol’ blog back then. Even so, I’m glad that I’ve kept it going.


On Tuesday, I had my appointment with the urologist to review my latest PSA results. In all honesty, it was probably a waste of both of our time and should have been postponed until after the PSMA PET scan.

Because today is Veterans Day, a federal holiday, they didn’t book any appointments in the clinic for today, so that meant that they overbooked appointments on Tuesday. That meant that the doctor was really pressed for time, and I was okay with keeping the meeting short.

The whole conversation went like this:

Dr.: Hi. What’s the status of the PSMA PET scan?

Me: It’s scheduled on 30 November.

Dr.: How are we going to get the results?

Me: I don’t know. I have to figure that out with UCLA. Not to sound rude, but given how new this is, are you going to know what to do with the results?

Dr. Oh, yeah. Not a problem. You can just hand-carry the results if you want. Everything else okay?

Me: Yep. Fine. So if the PSMA scan shows the cancer is still in the prostate bed, and given my PSA doubling time is 45 months, what do you see as the next step?

Dr.: Radiation. (Said without a hint of hesitancy.)

Me: Uh, okay.

And that was basically the conversation, with a few other minor details and questions not worthy of putting in writing. I don’t think she picked up on my reluctance to get zapped or, if she did, it was something that she, as the physician, wanted to overrule.

We agreed to schedule a follow-up in January with another PSA test in advance of the meeting and, hopefully, with the PSMA PET scan results in hand for all. For some reason, they get slammed just before and after the holidays, and the first available appointment was 8 February. I’m generally okay with that, but if the scan and the early January PSA tests reveal something compelling, I’ll try to reschedule sometime earlier.

So that’s about how I expected the appointment to go (even without the rushing).


Oh. I almost forgot. I’m now retired from work! Woo-hoo!

Yes, I took the leap, perhaps a little sooner than I expected, but that’s okay. I added everything up and it was just time.

I’ll be 64 years old in January, and there isn’t a whole lot of longevity in our family. Dad died at 69; his mom died at 69; and mom died at 73. I can’t say that the past is prologue, but you get the picture. As cliché as it is, tomorrow isn’t promised and, after 40+ years in the workforce, I wanted to reserve my tomorrows for me. Selfish, I know. 😄

Given where I’m at in my cancer journey, I also wanted to use as many good tomorrows as I can before radiation, hormone therapy, or the disease itself turns them into bad tomorrows.

Finally, frustration at work exceeded fun and rewards, so that was another good indicator that it was time to start the next chapter of my life.

My last day was 29 October, so I’m still adapting, trying to find a new routine. (It’s challenging going from 100 m.p.h. to zero!) I’m sure I’ll figure it out. I have another trip in the near future, and I’m excited about that.

So that’s it for this post.

Be well!

The Paradox of a Man’s Most-Feared Test, the PSA | The MIT Press Reader

https://thereader.mitpress.mit.edu/the-paradox-of-mans-most-feared-test-the-psa/

I found this to be an interesting article about the PSA test and all the controversy that comes with it and its use.

As someone who has lived with PSA tests in their life for eleven years, I can relate to much of what she’s said in her article. Just read through this blog and you’ll see that PSA anxiety is a very real thing.

But in those eleven years, I’ve also learned that the PSA test is merely a tool used to give you a data point. It’s just one of many data points that should be used in your decision-making process, either before initial treatment or after. Like any tool, you must be trained on how to use it properly.

There is no such thing as a “good” cancer. However, I do believe that prostate cancer is far more nuanced than many other cancers. When you hear those three words, “You have cancer,” the near universal response is, “Get it outta me! Now!” But with prostate cancer, that many not be the appropriate response in some cases. That’s where patient education at diagnosis has to become much better. It’s a huge paradigm shift for a cancer patient—and even some medical professionals—to realize that doing nothing (aside from routine monitoring) can be an option in certain cases.

That’s something that I’ve learned over the years.

I’ve been blessed to have a type of prostate cancer that has been so slow growing that it’s allowed me to be around for eleven years after diagnosis. Would I do anything differently? I may have postponed my surgery a little longer to watch what my PSA was doing over a longer period to establish a trend. However, given that the doctors felt a tumor during the digital rectal exams, that told me that I was dealing with something more than a few random cancer cells. There was a mass, and it needed to come out.

Obviously, I’ve made the choice to monitor as my PSA has slowly increased over the last six years since becoming detectable again, even though some were quick to recommend salvage radiation therapy. With luck the PSMA PET scan on 30 November will reveal whether that was the dumbest decision of my life or whether I may be able to continue on my current plan of doing nothing but monitoring or whether it’s time for salvage radiation.

Lastly, a few other things that I’ve learned in the last eleven years is that every patient’s case is unique and that even the medical professionals can’t always agree on the best course of action. You just have to do your own research and go with the best information you have available to you at the time. It’s your body, your life, your choice.

Be well!

Exceptions to “early salvage” radiation treatment for recurrence after prostatectomy — THE “NEW” PROSTATE CANCER INFOLINK

Here’s an interesting article about salvage radiation.

Three major randomized clinical trials and a meta-analysis have proved that for most men waiting for early signs of recurrence after prostatectomy (e.g., three consecutive PSA rises or a PSA of 0.1 ng/ml) to give radiation gave the same outcome as immediate (“adjuvant”) radiation (see this link). But there are exceptions. In some men, adjuvant […]

Exceptions to “early salvage” radiation treatment for recurrence after prostatectomy — THE “NEW” PROSTATE CANCER INFOLINK

Day 3,993 – PSA Results

No surprises here. My PSA went up slightly again from 0.21 ng/mL to 0.22 ng/mL. The only surprise was that I was able to get the results online a day earlier than usual

This also dropped my PSA Doubling Time from 48.1 months to 45.3 months. Not a biggie there, either, but still moving in the wrong direction.

UCLA also required a basic metabolic panel be done in advance in of the PSMA PET scan, so I got that knocked out, too. I’m supposed to bring a copy of the results to the scan and now I can print them out and not rely on the administrative gremlins to get them to me.

My appointment with the urologist is on 9 November and we’ll see how that goes.

Month 131 – Biding Time

There’s really not much to report this month other that I’m simply biding time until the PSMA PET scan at UCLA on 30 November 2021.

I did receive confirmation that the doctor put in the order for the basic metabolic panel test and another PSA test, so I may get those knocked out this week to make sure they go well. I have to bring a hardcopy print out of the BMP test results to the scan, so better to get it done early to make sure that I can have a copy made available. If I can’t print it out on my own, then I’ll ask for it to be available during my appointment with the doctor on 9 November. (That was my next regularly scheduled appointment. I had hoped we would be discussing the PSMA PET scan results by then, but that’s not meant to be.)

Work will be keeping me extraordinarily busy through mid-December so, in a way, that’s a plus. It should keep my mind off of all of this. I just need to make sure that work takes a back seat to any appointments or tests.


On an unrelated note, I was able to get my seasonal flu shot and my Pfizer COVID-19 booster shot last week. I did take them together and felt a little wonky for about 36 hours (fatigued, felt as though I had a temperature but didn’t). Who knows whether it was the flu shot or the booster that caused that (or both), but it really doesn’t matter. I’m better and I’m better protected.

So that’s about it for this post. More to come…

Be well!