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!

Day 3,968 – Logjam Broken?

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

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!

Month 130 – Enjoying Some R & R

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!

Be well!

Prostate Cancer Awareness Month

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.

Day 3,943 – Referral Ping-Pong

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!