Tag: VA Medical Center San Diego

Month 191 – Calm before the Storm

On By DanIn Hormone Therapy, Prostate Cancer1 Comment

It’s been a busy time since the last regular monthly post, but in a good way.

I managed to unplug for five days by taking a trip to chase autumn colors in the Eastern Sierra using Bishop, California as my base. I was a week or two early, but still managed to find some good colors. When I returned, I was Mr. Social Butterfly, going to one of the San Diego Padres’ last home baseball games; attending a friend’s birthday party; going to our monthly trivia night with friends at a favorite watering hole; and then watching the Padres beat my hometown Chicago Cubs, all in my first week back. It was good to disconnect and be distracted for a while. I needed that.

Before leaving on my trip, I participated in an online advanced prostate cancer support group run by the AnCan Foundation. (I had featured one of their videos on this blog back in April.) Within the group, there were a few doctors but pretty much everyone else were fellow prostate cancer patients sharing their experiences.

There was a ton of information that was flowing, so it was a tad like trying to take a sip of water from a firehose, but I did come away with some valuable input. Key points included:

  • Different experiences on different ADT + ARPI drug combinations when it came to side effects. The consensus seemed to be Orgovyx® and darolutamide were the preferred combination.
  • There was also a recommendation for me to push to get an Axumin PET scan given the four negative PSMA PET scans and the negative [F18] FDG PET scan.
  • One of the members strongly encouraged me to connect with Dr. Matthew Rettig who operates out of the West Los Angeles VA Medical Center and UCLA. (When I searched on “best prostate cancer medical oncologists in Southern California,” his name was number two on the results.)
  • They encouraged me to more thoroughly investigate a VA disability rating given the changes in how prostate cancer is addressed under the PACT Act. That’s low on my priority list for a variety of reasons that I won’t go into here.

I have to admit that, given my trip, my social calendar, and my need to unwind from both, I’ve been a bit slow in digesting the meeting’s contents and determining how I want to proceed.

Dr. Rettig’s opinion would be valuable at some point, and I’m just figuring out how and when to do that. I have the CT and bone scans scheduled next month (see below) and, to be honest, I don’t expect that they’ll show anything. I’m thinking that a set of negative results on those scans would give me strong justification for getting an Axumin scan and for the referral to Dr. Rettig. I can say, “I tried what you recommended. Now let’s humor me and find a way to get the Axumin scan.”

The VA can be a bit rigid in its protocols and procedures, and I’m inclined to go through the medical oncologist at VAMC San Diego to get the referral to VAMC West Los Angeles. I don’t want to be stepping on anyone’s toes, or finding out that I’ve inadvertently transferred my full-time care to Los Angeles. (The 147-mile / 236 km drive between home and VAMC WLA is brutal.)

For now, I’m content to wait the six weeks until the scans, get their results, and then push to see Dr. Rettig and go for an Axumin scan if needed. I should have an updated PSA test result at that point, too. Of course, I reserve the right to change my mind. 🙂

As I’ve been writing this post on Friday night, 9 October, I’ve had one ear open on the forecast for Tropical Storm Rachel, which should be arriving in the San Diego / Tijuana area in about 24 hours. The National Hurricane Center issued a Tropical Storm Watch for San Diego, and this is only the second time ever that a tropical alert has been issued on the west coast. (The last time was in 2023 for Hurricane Hilary. The last time a tropical system actually made landfall on the California coast was 1939.)

UPDATE 5 P.M. PDT, Saturday – Rachel’s forecasted track has moved a bit to the east. Friday night, it was going to pass about 17 miles / 27 km from my house near Tecate; the current track has it passing about 85 miles / 137 km east of my house near Mexicali.

It looks like the brunt of the storm will kick in around 11 p.m. and last through about 10 a.m. tomorrow. One forecast model shows wind gusts in my neighborhood will get up to about 45 mph / 72 km/h. It the mountains east of San Diego, it’s showing they may get up as high as 90 mph / 144 km/h.

The reason I’m so interested in tropical systems is because I rode out Hurricane Iwa which hammered Oahu (where I lived) and Kauai in 1982. It was quite the unnerving experience, About 2 years later, one of the ships I was assigned to got caught up in the periphery of a typhoon while we were at sea, and waves washed away one of our inflatable life rafts. Experience tells me to heed the warnings and take precautions. Better safe than sorry.

More to come. Be well!

Rachel’s Track Friday Night
Rachel’s Track Saturday afternoon

What’s Next

DateEvent
23 November 2026CT and bone scans
1 December 2026PSA Test
8 December 2026Medical oncologist appointment

Header image: North Lake near Bishop, California

Day 3,968 – Logjam Broken?

On By DanIn imaging, Prostate Cancer3 Comments

The administrative logjam between VA Medical Center San Diego and UCLA may have been broken this morning.

Yesterday, I called UCLA to see if they could access my health record through the Veterans Health Information Exchange, and the short answer was “no.” While I had them on the phone, I asked if they would accept printouts of my medical records from me and, again, the short answer was “no.” They had to come from the doctor’s office. Ugh.

Not being one to always listen to what I’m told, I went ahead and sent my demographics and insurance information to UCLA on my own. I also hopped onto the VA website and submitted my official Request for Authorization to Release Health Information form so they could send my medical records to UCLA.

Within about an hour and a half of submitting the request, I had a call from the woman processing it. She had a couple of questions that I answered. “Great. I’ll fax this to them right now.” That was not the response I was expecting. I thought the VA would take 3-5 business days to pull the records and send them.

When I spoke with UCLA on Monday, they did mention how slammed they are with requests for PSMA PET scans, and that it may take a few days to process the paperwork on their end once it was received. I’ll give a call on Thursday or Friday to follow up and see if they have everything they need. With luck, they will and we’ll be able to get the scan on the calendar.

The scheduler said they were currently scheduling for late November right now.

Fingers crossed that everything will be in order and I’ll be able to get a scan on the calendar.

More to come…

Be well!

Day 3,963 – Let the Referral Battle Begin

On By DanIn imaging, Prostate Cancer5 Comments

One of the first things that I did after returning from my trip to Yellowstone and the Grand Tetons was to call UCLA Department of Nuclear Medicine to check to see if they had all of the necessary paperwork from the San Diego VA Medical Center to schedule the PSMA PET scan.

They did not.

Apparently, they were still missing my demographic information, my insurance information, and at least a 6 month medical history for me. Grrrr. 🤬

I emailed the VA and got some mealy-mouthed response back saying that I should be the one providing the demographics and insurance information and, that if I wanted my medical records released, I had to complete and submit a form giving them permission to do so. They could have told me that weeks ago.

The medical records thing is particularly annoying because, according to the VA website, the Veterans Health Information Exchange is set up to electronically share medical records with certain community providers that are providing care. UCLA Health is one of the approved community providers.

The only quirk that I can see in this is that the community provider has to be providing me care and, technically, UCLA is not yet doing that, so I suspect the VA will claim that, because I’m not under active care there, they can’t share the records. A classic Catch-22. The kicker is that I don’t have to do anything to opt in to the sharing. It should automatically happen.

My plan going forward is to ask the VA about the VHIE and see what they say. But as a back-up plan, I’m going to print my VA health record for the last year, my insurance information, and provide them my demographic information, and send the entire packet to UCLA myself, VA be damned.

More to come, I’m sure. In the meantime, I’ll do my best to not let my vacation wear off too quickly.

Be well!

Day 3,943 – Referral Ping-Pong

On By DanIn imaging1 Comment

Well, that was disappointing.

UCLA did, in fact, receive the referral form from my doctor at San Diego VA Medical Center, but it was incomplete. They sent it back to be filled out correctly this time because they can’t schedule the scan without all the information.

You know me… Of course, I sent an email to my buddy at the VA informing him of the situation and asking him to advise me when the corrected, fully completed of the form is returned to UCLA. We’ll see how that goes.

The saga continues…

Have a great weekend and be well!

Day 3,521 – A Chat with the Doctor

On By DanIn Prostate Cancer3 Comments

My appointment with the doctor is scheduled for tomorrow afternoon, but after dinner this evening, my phone rang. It was the doctor calling about my appointment.

In a nutshell, VA Medical Center San Diego is trying to reduce the number of in-person visits during COVID-19, so he was wondering if I would be okay chatting with him about my results over the phone. Of course, I was.

He let me know that my PSA dropped from 0.16 to 0.14 ng/ml and that things were pretty “stable” and having a “low PSA” was a good thing. He mentioned that at some point in the future, we may need to discuss radiation, but that point wasn’t now. “For you, that could be years from now.” I’ll take that.

I shared with him my desire to do imaging before zapping if possible. I also brought up the trial at the VA Los Angeles, and he wasn’t aware of it. So I pulled it up and shared the trial number with him for his education / reference.

Bottom line: We agreed to retest in January and go from there.

Now all I have to do is make it through six months of COVID insanity…

On a related note, the VA healthcare system has gotten a bad rap over the years for a variety of things. It seems to be location-dependent, and some of the criticism is well-deserved.

I’ve been going to the VA Medical Center San Diego and its satellite clinics for about 8 years now, and I’ve had nothing but a positive experience, and tonight’s unsolicited call from the doctor just reinforced that for me.

As we used to say in the Navy: Bravo Zulu! (Well done!)

Stay well everyone!

#WearAMask #SocialDistancing #WashYourHands #StayHome