Tag: Prostate Cancer Blog

Day 3,906 – UCLA PSMA Update

On By DanIn imaging, Prostate CancerLeave a comment

It’s been a week since I submitted the form on the UCLA website for a referral for the PSMA PET scan, and I hadn’t heard anything back, so I called them this morning.

When I mentioned that I submitted the form about a week ago, the agent said, “Oh. Yeah. We can’t book appointments using the form on our website. We need to take that down.” Uh. Okay. Good to know.

To schedule the PSMA scan:

  • The referring physician needs to call the scheduling number: +1 310-794-1005.
  • UCLA Nuclear Medicine will fax a referral form to the doctor to complete and return.
  • It will take 24-48 hours to process the returned form.
  • They’ll work with the patient to select a date for the scan.

They are currently scheduling appointments in September, so there’s a bit of a delay which isn’t all that surprising.

Now all I have to do is convince my doctor at the VA to go through the process once we get the bone scan results back. I’m not sure how that will go, but you can bet I’ll push pretty hard to make it happen.

If they insist on doing the Axumin scan at the VA first, I guess I’m okay with that. But if that comes back negative, I’ll really press for the PSMA PET scan. I’m just not all that keen on having all this radioactive juice injected in me over the course of a few weeks.

We’ll see how things go.

Be well!

Day 3,904 – General Update

On By DanIn Prostate Cancer2 Comments

Between work and dealing with this recurrence, I’ve been burning the candle at both ends, and it’s beginning to take its toll on me.

Don’t get me wrong, emotionally I’m doing fine. It’s just one of those periods where the further you go, the behinder you get. But I have managed to work in a little R&R along the way.

Here are just some general updates on some of things in the works:

UCLA Ga-68 PSMA PET Scan

I’m actually a bit surprised that I have yet to hear from the Nuclear Radiation department at UCLA concerning the PSMA PET scan. I submitted the online form requesting a consultation / appointment about a week ago, and crickets. I’ll give it another day or two, and then I’ll call rather than resubmit the form. Maybe I’ll get a little further that way.

Hallway Radiation Oncology Consult

One of the perks of having your office in a hospital is that you get access to people and information that you may not otherwise have.

Regular readers may recall that one of our radiation oncologists (RO) at the hospital popped into my office looking for some information. We chatted and, long story short, we had a little consult about my case right in the lobby of my office. Several months later, we ran into each other again, and we did a mini update consult.

If these CT and bone scans yield something positive, the San Diego VA Medical Center in La Jolla may very well refer me to this RO for treatment. That made me wonder: Is Dr. RO familiar enough with a Ga-68 PSMA PET scan that he would know what to do with the results?

So I asked him in an email:

I guess my question to you is how helpful to you as an RO would a PSMA PET scan be in planning SRT? I ask because VAMC San Diego once referred me here to talk with Dr. W. here at NMCSD a few years back, and I suspect that if I did get a PSMA PET scan at UCLA, VAMC would likely refer me back to NMCSD for SRT. Because it’s so new, I’m just curious if it’s been folded into your treatment planning bag of tricks.

That may have seemed pretty ballsy of me to do, but his response verified it was worth asking the question.

In short, he’s never ordered a PSMA PET scan yet and isn’t familiar with the specifics. He is, however, familiar with the Axumin scan (we have it at our hospital) but he also recognized its weakness when it comes to detecting anything at my PSA level.

Needless to say, I was quite appreciative of the fact that he took the time to answer, and to have an answer that was so open and honest. Kudos to him.

Bone Scan

My bone scan is scheduled for Friday. I’ll pop into the lab in the morning, get my glow-in-the-dark juice injected, and then wait for about 3 hours to get scanned.

I had a baseline bone scan seven or eight years ago, and I don’t recall having any issues with the contrast for it like I did for the CT scan last week. That was awful.

Again, I don’t expect it to show much of anything, other than perhaps some further degeneration of some old injuries. But if it, on the off chance, does pop positive for distant bone metastases, that’s a whole new ballgame.

Weekend Relaxation

To push aside some of the stress of the last few weeks, some coworker friends of mine decided it would be a good idea for all of us to go to Tijuana, Mexico on Friday night.

It was.

Even though the border is 7 miles / 11 km from my house, this was my first trip to Tijuana since being stationed here in the Navy in 1987-1989. Let’s just say, it’s changed.

We went to a place called The Park, which is best described as a high-end food court. You’re seated at your table and a server comes to take your order from one (or more) of any of the 8 or so restaurants in the complex. When the food is ready, they’ll bring it to you. It’s an interesting concept and the food was high quality. (I have a not-so-good track record of going to Mexico and coming back with a case of Montezuma’s Revenge. Not a problem at all this time.

I have to admit that it was a bit funny, though. It was like one of those “Which one doesn’t belong” cartoons for kids. Out of the 8 of us who went, 6 were of Mexican ancestry, and 2 of us weren’t. Can you say, “Odd man out?”

Look for the write-up coming out soon on my other website, ExploreSanDiegoandBeyond.com.

Urologist Appointment

Lastly, I have my appointment with the urologist to review the CT and bone scan results on 3 August 2021. I hope to have some answers from UCLA by then so we can have the Axumin vs. PSMA PET scan discussion in earnest, and figure out which one we’ll pursue next.

Summary

So that’s it. Just a lot of administrative stuff, testing, waiting, and more of the same.

I’ll keep you posted on how things progress. Perhaps from a bar in Tijuana.

Be well!

Day 3,901 – CT Scan Results

On By DanIn imaging, Prostate CancerLeave a comment

Let’s start with the BLUF:

No definite evidence of locally recurrent or metastatic disease within the abdomen or pelvis.

(If you don’t know, BLUF = Bottom Line Up Front).

There was one 9 mm kidney-shaped lymph node that caught their attention, but didn’t think it to be remarkable.

They also commented on a bunch of my other organs and bits and pieces, but nothing seemed too out of the ordinary for any of them aside from a few dents and scratches from 63+ years of normal wear-and-tear and countless miles/kilometers.

The fact that the CT scan didn’t pick anything of substance up is a good thing and a bad thing. Good because it didn’t see anything; bad because it didn’t see anything. The likelihood of it detecting the lesions at my PSA level were small, and we knew that going into this. So even though we didn’t see anything, that doesn’t necessarily mean that it’s not there.

I did get a chuckle out of one line in the report:

Multidetector CT abdomen/pelvis was obtained after the uneventful administration of intravenous contrast.

Uneventful for who??? The radiologist? Sure. I did everything in my power to not puke all over their $300,000 scanner. 😲

I expect we’ll have the same result with bone scan next week, but time will tell.

That’s all for now.

Be well!

Day 3,900 – Requested Info from UCLA on PSMA PET Imaging

On By DanIn imaging, Prostate Cancer2 Comments

Just a quick update…

This morning, I went onto the UCLA website and filled out the form to request more information about the Ga68 PSMA PET scan and perhaps even schedule an appointment with them. We’ll see how long it takes for them to respond. I’m gue$$ing it may be pretty quickly as they want to get more people using their test and facility. Ju$t a hun¢h.

“Cynic, table for one. Cynic.”

That contrast used in the CT scan yesterday really kicked my butt. The juice was injected into me shortly after 2 p.m., and as I was heading to bed around 9 p.m., I could still feel some of the side effects from it.

I did drink a lot of liquids to help purge it from my system and that translated into multiple runs to the toilet through the night last night. Oh well. It all caught up with me around 2 p.m. this afternoon when my ability to focus just ran head-on into a brick wall. I hung it up at the office and came home.

I just checked for the scan results online, and nothing posted yet. I suspect it will be on the weekend that I’ll be able to see them. Of course, they’re usually written in such a away that a lay person has trouble comprehending what’s on the page. We’ll give it a try, though, when the time comes.

That’s about it for today. Hopefully, the next post has news about the PSMA test or the CT scan results, or both.

Until then, be well!

And the Winner Is…

On By DanIn Prostate Cancer2 Comments

Congrats to Jim P.!!!

You’re the person who gave the 1,000th like on my blog!

I wish I could give you a prize like a trip to your dream destination or a cure for this pesky disease but, alas, I don’t have a magic wand to make either happen.

But to everyone who’s followed along and liked the content, thank you!

Be well!

Day 3,899 – CT Scan

On By DanIn Prostate Cancer, Recurrence7 Comments

You know me. I love tracking things, and this post is the 400th published post on this blog. Woo-hoo! 🎈🎉✨ Of course, I would have preferred to not have written any of them at all, but that’s life.

I thought I had had a CT scan in the past, but if I did, I don’t remember it being anything like what I experienced today. It kicked my ass. Technically, it was the contrast they injected into me that kicked my ass. The scan—sliding in and out of the scanner—was a non-event.

The radiologist forewarned me of the sensations that I would experience shortly after he injected the contrast. The sensation of a full and warm bladder? Check. Metallic taste in my mouth? Check. A warm sensation throughout my body? Check.

What he didn’t do a very good job of was forewarning me of the intensity of the some of these things. At one point, I thought I was going to vomit like Vesuvius. It was awful. As soon as he stopped the IV flow of contrast, I could feel some of these side effects dissipating. (But not nearly as quickly as they came on.)

I didn’t even bother to ask the technician if they saw anything odd on the scan as they were running the test. I’ll usually do that because sometimes, if you’re lucky, the technician will help you out. They may not be able to be all that specific, but I’ve had one or two tell me, “You really don’t have anything to worry about.” I was just more focused on getting out of there without puking.

The whole appointment went like clockwork and went faster than I expected. My appointment was for 2:30 p.m. I pulled into the parking garage at 1:45 p.m.; was checked in a Radiology by 2 p.m.; on the scanner bed by 2:10 p.m.; and headed back to my car by 2:35 p.m. Again, I know there are tons of complaints about the VA healthcare system, but San Diego VA Medical Center has been top-notch as far as I’m concerned.

The radiologist thought they would have the full results available by Friday.

I’ll have to admit that on my commute to work this morning, I had a bit of a knot in my stomach. Not because I was afraid of the scan (now I am—a little), but because this is the beginning of the process that will give me results I may not want to hear.

On a related note, my employer-provided healthcare insurance did confirm that the Department of Nuclear Medicine at UCLA is in network, so that’s a good thing.

What’s next? Here’s an estimated timeline:

  • Get online access to CT Scan results sometime this weekend or early next week.
  • Have the bone scan on Friday, 23 July.
  • Get online access to bone scan results 3-5 business days after the scan.
  • Have a follow-up appointment to review both scan results with the urologist on 3 August.

I’ll contact UCLA to start that process and hopefully have all of my homework done in time for the appointment on 3 August.

Well, time to drink a few liters of water to purge that contrast out of me.

Be well!

Month 128 – Doing Your Research for PCa

On By DanIn Prostate CancerLeave a comment

“It’s been a quiet week in Lake Wobegon, my hometown…”

Yeah, right.

There’s really nothing new to report regarding the PSMA PET scan and insurance coverage. I’m still awaiting explicit clarification that I will be covered and that UCLA is in-network. More to come.

What I do want to talk about in this month’s post is some of the resources that I routinely use to do my research on all of this. There are a few that I believe have high quality, easy-to-understand information for patients, and there are a few that keep you informed of the latest research and treatment options.

As you’ve seen in a few of my recent posts, I’ve been a little late to the game in terms of finding some very educational YouTube videos that talk about prostate cancer and treatment options. I may create playlists of videos that I’ve saved on the YouTube account associated with my contact information.

Prostate Cancer Research Institute

The Prostate Cancer Research Institute is a wealth of information that’s presented in such a way that patients and their partners can easily understand. My only criticism is their color-coded staging system that they use. I believe they created it thinking it would simplify things, but it’s not used beyond PCRI (as far as I can tell), so it can be quite foreign initially.

PCRI’s videos are short and packed with information. They also answer a number of the more common viewers’ questions left in the comments.

Lastly, they do have a patient helpline that you can access either online or via phone. They were pretty timely in their response to an online question that I submitted.

The New Prostate Cancer Infolink

The New Prostate Cancer Infolink is a great source of information regarding current research on a variety of prostate cancer-related topics. The website isn’t the most aesthetically pleasing, but there is a wealth of current information available. Some of it is a bit on the technical side, but most of the posts include links to the specific research articles they mention. That can be handy if you’re the type of person who likes to read that stuff. (Hmmm… Remind you of anyone in particular???)

I’ve found that the authors are generally responsive to comments or questions left on the post.

Other Resources

You can check out the Resources page on my blog to learn about a number of other resources. Some are quite general in their approach to educating patients, some are a bit more specific, and, sadly(?), some to be more focused on fundraising than patient education. Don’t get me wrong, Funding research is critically important. It’s just that you may not find some of the detailed information you’re seeking on those sites.

The other thing that’s interesting is how each major organization interprets the same topic and provides oftentimes differing information between organizations. Welcome to the frustration of prostate cancer research. I tend to look for the commonality between the information being shared, and that tends to reinforce that it’s a more widely accepted approach.

Lastly, I always look at the “freshness” of the articles or papers that I’m reading. Were the written in 2020, or in 1997? That can make a significant difference, too. When you’re looking at retrospective studies that tracked patients for 7, 10, 15, or more years, you have to remember that treatment technologies and methods have changed in those periods of time. So the statistics you’ll see in the report may be slightly biased because of their age and the changes in the field of prostate cancer management.

Of course, always be wary of prostate cancer blogs written by crazy, bitter old men sitting around in their underwear on their computers… Be especially wary of #13 and #26 on this list. 😂

Research Pays Off

Yes, researching prostate cancer can be absolutely maddening but, if you do it correctly, it will pay off in the end. It makes you a much better educated patient, and you can have far more credibility and influence with your medical team than if you’re just along for the ride. And if you think the doctors don’t notice, they do. Here’s my doctor’s notes from my last visit:

Very well informed about his disease. Uses MSK nomogram.
He brings an article regarding68Ga-PSMA 11 PET scan. He
reports that if PSA is truly at 0.21 that he would like to
complete, even if he needs to pay out of pocket.
He is involved with support groups and has a blog Dansjourney.com

I was a little disappointed, however, that there was no ⭐. 😂🤣😂

Okay. Enough silliness. Time to put my pants on, step away from the keyboard, and enjoy the 75° F / 24° C San Diego day.

Be well!

Day 3,895 – Insurance Update

On By DanIn Prostate Cancer, Recurrence, TreatmentLeave a comment

I just received a quick update from my health insurance company regarding coverage of the Ga68 PSMA PET scan at UCLA—the quick turnaround surprised me. It appears to be good news, but it was a little squishy, so I had to ask for confirmation of a few things.

In their email to me, they listed the contractual amount that they would pay out for each CPT code that I gave them, but that’s all they said. It sort of implies that I’m covered, but it doesn’t say so explicitly. Needless to say, when dealing with insurance companies, I want things to be very explicit without any loopholes.

I just sent them and email asking them to:

  • Confirm that I am covered under my employer-provided healthcare plan.
  • Confirm whether or not UCLA Department of Nuclear Medicine is considered to be in-network or out-of-network (different deductibles).

Hopefully, I get that confirmation early next week and can share the information with my doctor.

More to come…

Be well!

Day 3,893 – PSMA PET at UCLA Info

On By DanIn Prostate Cancer, Recurrence2 Comments

My health insurance company replied to my email with more questions than answers, which was okay by me because they were trying to learn more about the Ga68 PSMA PET scan at UCLA.

First, they were looking for the Current Procedural Terminology (CPT) codes that would apply to the imaging. I didn’t know what those were, so I had to do a little searching:

Current Procedural Terminology, more commonly known as CPT®, refers to a medical code set created and maintained by the American Medical Association — and used by physicians, allied health professionals, nonphysician practitioners, hospitals, outpatient facilities, and laboratories to represent the services and procedures they perform. No provider of outpatient services gets paid without reporting the proper CPT® codes.

https://www.aapc.com/codes/cpt-codes-range/

I called the Nuclear Medicine Clinic at UCLA (+1 310-794-1005) to get the applicable CPT codes, and they happily shared them with me:

78815
70491
79260
74177
A9597

My insurance company also wanted to know the specific address of the clinic to help determine if they were in or out of network:

200 UCLA Medical Plaza
Los Angeles, CA 90095

Lastly, I did ask the UCLA representative how much the scan costs and, as of 8 July 2021, it’s $3,300.

So I fired all of that information back to my insurance representative and am awaiting her response. I’ll keep you posted.

Be well!

P.S. To anyone trying to get information about the Ga68 PSMA PET at UCLA for their insurance company, you’re welcome!

Day 3,892 – Scan-a-Palooza

On By DanIn Prostate Cancer, Recurrence6 Comments

Let the radioactive fun begin!

I was able to schedule my bone and CT scans this morning with considerable ease. In fact, things will happen much sooner than I thought they might. My CT scan is scheduled next Wednesday, 14 July, and my bone scan is scheduled Friday, 23 July.

I have to go for some pre-scan lab work tomorrow afternoon to ensure that my kidneys are working fine and won’t be damaged by one of the contrasts.

I haven’t given up on the Ga-68 PSMA PET scan. In fact, I wrote my health insurance company an email about 4:30 a.m. as I tossed and turned. (Last night was hell. If I slept more than 2 hours—non-consecutively—that was about it.) They tout having a response within 2 business days, so we’ll see if they come through with that.

UCLA is out of network for my insurance company, so I’d have to cough up 40% of the cost if they’re going to cover it at all. I’m okay with that. (For my overseas readers, welcome to U.S. health care systems!)

So that’s the latest and greatest. More to come, I’m sure.

Be well!