I’m actually writing this post at the end of August and am scheduling it for an 11 September publication date because, as you’re reading this, I’m returning from my first trip to Yellowstone National Park. That, or a grizzly bear dragged my carcass off into the woods for a late evening snack, and this will be the last post you see from me. 🤣 With luck, you’ll be reading about my trip on my other blog, Travelin’ Dan in a few days.
On a more serious note, I had been planning this trip since March, but the timing could not have been more perfect. I really needed the break from some of the challenges at work plus, I view this as the calm before the prostate cancer storm. It would be good to go into that with a rested body and more relaxed mind.
The prostate cancer storm being, of course, being able to get the 68Ga-PSMA-11 PET scan scheduled, seeing the results, and then planning a course of action based on those results.
So that’s it for this relatively short post. I hope I had a great trip and I wished you were there!
It’s that time of year again. Time to remind our friends, family, and coworkers that September is Prostate Cancer Awareness Month.
Even if you don’t think it can happen to you, it can. I’m a classic example of that. There was no family history and, at the ripe old age of 52, I was diagnosed without exhibiting any symptoms whatsoever. Surprise!
There’s a ton of really great organizations out there educating men and their spouses about prostate cancer. You can see many of them on my Resources page.
You don’t have to become an expert on prostate cancer, but you should take time to learn the risk factors, symptoms, different types of prostate cancer, and treatment options. Hopefully, you’ll never have to put any of that newfound knowledge to use, but if you are unfortunate enough to hear those three little words—”You have cancer”—you’ll have a little bit of a head start when it comes to making decisions.
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.
I received an email today confirming that the urologist had received, completed, and returned the referral form back to UCLA. They asked me to follow up with UCLA Department of Nuclear Medicine to confirm they received it. Gladly.
I called their scheduling office this afternoon to do just that but, unfortunately, my referral wasn’t in the system yet. I checked the time on the email I received, and it was only about two hours before I called UCLA, so that kind of makes sense. She said that it can take 24 to 48 hours to get the referral into the system.
The scheduler said that they’d review the referral, place the order for the 68Ga-PSMA-11 PET scan, and then call to schedule it. Right now, they’re scheduling in late October unless there’s a cancellation that I might be able to take advantage of.
On the one hand, I’m perfectly fine taking the ignorance-is-bliss mode of not rushing to this (considering my long PSA doubling time); but on the other, I want to get this going and find out what the next step will be. Right now, the primary thing on my mind is planning my next vacation.
I’ll call again on Friday to see if my referral landed in the system, and we’ll go from there.
I called the UCLA scheduling office and explained the situation to the scheduler, and she thought that it was odd that the referral form wasn’t sent to my urologist for the referral. In any case, it took a whopping 5 minutes and 54 seconds—including navigating the phone menu tree, waiting for “the next available operator,” and the discussion—to hopefully break the logjam.
I called the doctor’s office and emailed him to let him know that he should be on the lookout for the faxed referral form. We’ll see what happens next—and when.
I grew a little impatient with my team at the San Diego VA Medical Center not providing any information about the referral for the PSMA PET scan at UCLA since our consult on 3 August, so I sent them an email at the end of the week asking for an update.
This morning, the doctor that I had for the consult—the one who thought this was a good idea and who seemed eager to get it scheduled—reported that UCLA has yet to send him the form that he needs to do the referral. He didn’t exactly say when it was that he asked, but he did say that he would follow up with them tomorrow.
He gave me their fax number, so I, too, will give UCLA’s Department of Nuclear Medicine a call tomorrow to see what needs to be done to get them off the dime and to send the referral form.
That’s about it for now. More to come, I’m sure.
On an unrelated note, my bonkers incontinence issues have calmed considerably, but not quite back to where I can go without pads yet. Not sure what that was all about.
Here’s a good overview of PSMA diagnostics by Dr. Calais, one of the UCLA doctors involved with getting 68Ga-PSMA-11 PET approved by the FDA. It’s a bit on the technical side, but it does show the strengths and limitations of the imaging technique.
An interesting study concerning the timing of Androgen Deprivation Therapy (ADT).
For many years your sitemaster has been advising patients that overly early use of androgen deprivation therapy (ADT) in many men with progressive prostate cancer is not necessarily the best decision (for a number of possible reasons). The benefits of such early ADT — in terms of metastasis-free survival (MFS) and/or overall survival (OS) — […]
Okay, if you don’t want to read a frank discussion about incontinence, then CLICK HERE to go find some cute kitten and puppy videos. Otherwise, read on…
In short, I don’t know what in the hell is going on with my incontinence. For years, I’ve been able to get away without pads because I was routinely “dry.” A sneeze or a cough might cause a few drops to come out, but that was it.
But in the last month or so, things have changed considerably for the worse. I’m back to wearing Depend Shields for Men on a daily basis, but I’m discovering that those may not be enough protection.
A week or so ago, I was watching TV on the sofa in the family room and had to get up to go to the bathroom. It wasn’t anything urgent—just a normal call from nature. As I stood up, my bladder just emptied itself right there on the spot. Of course, the shield wasn’t equipped to handle that and my trousers were soaked.
Today at work near the end of the day (thankfully!), I had a tickle in my throat and started a mild coughing fit to get rid of it. With each cough, I could feel a squirt going into the pad and, before long, the pad was at capacity and I could feel my trousers begin to get wet. (I wear only black trousers for this reason—to help hide any “accidents.”) What shocked me, though, was there was an area of wetness that extended to my shirt about 10 cm/4 inches above my belt line! “How the f*ck did that happen?!?” I have no idea.
Needless to say, to have this much change in such a short period of time is more than disconcerting. In fact, you could say that I’m pissed off at getting pissed on. 🤬 (Yes, that’s dark prostate cancer humor.)
I did check online for the lab results for the UTI tests that we did last week, but I only see the bloodwork results and not the urinalysis results. I emailed the doctor to find out what’s going on and reported the last few incidents, too.
Edit after posting:
I’ve tried to determine what’s causing this, but have been coming up empty. I haven’t changed the volume of liquids that I drink on any given day. It doesn’t seem to be restricted to a certain time of day. My weight, although more than I would like it to be, has been pretty stable throughout the last year or two. It’s mystifying and makes me wonder if it’s related to my increasing PSA somehow.
There’s no update to share on the scheduling of the 68Ga-PSMA-11 PET scan. I figure I’d let the administrative wheels churn through the end of this week before asking the doctor on his progress with the referral.
My visit to the urologist this afternoon went just as expected, and even a little better.
With the San Diego VA Medical Center being a teaching hospital, it’s rare that I see the same doctor twice. Because I liked the doctor I saw last time because of the conversation we had and the plan that we mapped out together, I specifically requested to see her again this time. Unfortunately, a young resident showed up in her place.
That actually may have worked to my advantage.
Dr. K started the conversation by asking if I had come to a decision as to whether I wanted to do salvage radiation therapy or hormone therapy. I was a bit taken aback by that—”Haven’t we skipped a few steps here, Doc?”—but then I remembered the way that Dr. L wrote up her notes from my visit with her, it would be easy for him to come to that conclusion.
I filled in a few of the blanks with Dr. K regarding our plan to follow up the negative CT and bone scans with an Axumin or PSMA PET scan in hopes of finding the cancer before making the SRT vs. ADT decision. He dutifully reminded me that either or both scans could come back negative, too, meaning that the cancer was still likely in the pelvis or prostate bed.
Interestingly, when we were talking about the merits of the Axumin and PSMA PET scans, he immediately went to, “Why even bother with the Axumin scan; go straight to the PSMA scan.” I didn’t even have to nudge him in that direction. He and I were on the same page.
To his knowledge, though, SD VAMC had not yet referred anyone to get a PSMA PET scan, but he seemed eager to figure our how to make it happen and have me be the first (or among the first) to be referred. He wasn’t even sure where to begin, so I told him.
I opened my file folder that I had with me and pulled out the one-page sheet that I had put together, stepping him through the referral process that UCLA had shared with me. It was all there for him, and he asked, “May I keep this?”
He did admit, though, that he had no idea how long it may take to get approval from the hospital team before he could even ask for the referral, so this may play out over a few weeks or longer. Rest assured that I’ll keep on top of this, asking for periodic updates.
I’m pretty excited that we’re moving in the direction of going straight to the PSMA PET scan, but also recognize there can be a number of administrative twists and turns along the way.
In the interim, we agreed to test my PSA again in early November, keeping on a four-month testing cycle. I’m okay with that while we’re trying to sort everything else out.
We also talked about my incontinence episodes becoming more frequent and more substantial in the last 6 weeks or so. He wanted to rule out a urinary tract infection, so he sent me off for some labs and we’ll see what they yield.
These episodes have put me back in incontinence pads for the last few weeks. Before, a sneeze or a cough would yield a few drops; now, they yield a squirt. Not good.