Author: Dan

Yosemite National Park

On By DanIn Prostate Cancer2 Comments

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

Dan's avatarTravelin' 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…

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Eleven Years

On By DanIn Prostate Cancer5 Comments

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

On By DanIn Diagnosis, Prostate Cancer3 Comments

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

On By DanIn Prostate CancerLeave a comment

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

On By DanIn Prostate CancerLeave a comment

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

On By DanIn imaging, Prostate CancerLeave a comment

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 3,976 – Success!!!

On By DanIn Prostate Cancer4 Comments

After some additional administrative shenanigans late last week, I was finally able to confirm that UCLA had everything they needed, and we scheduled the PSMA PET scan for 30 November 2021. It’s a bit further out than I would have liked, but it is what it is.

They still need to get pre-approval from my insurance company, and they were quick to remind me that it’s $3,300 out-of-pocket if the insurance doesn’t approve it. “You can pay by credit card,” and she rattled off the list of cards that they didn’t accept.

At least it’s on the calendar for now.

It will be interesting because I go for my next PSA test the first week of November with the appointment with the urologist on 9 November. Having a fresh PSA number going into the scan may be helpful, or not.

There are some guidelines to follow in advance of the scan:

  • Fast for 6 hours in advance of the scan; only drink water.
  • No vigorous exercise 24 hours in advance.
  • Okay to take any medicine, but only with water.
  • I need to have a “Basic Metabolic Panel” done within 8 weeks of the scheduled date, and I must bring a printed copy of the results to the scan. The scan will not be done if I don’t have them.

I’ve already got my hotel reservation for the scan, as getting to UCLA from San Diego on the same day would be tricky given the uncertainty of traffic.

So that’s that. Finally. 😌

I’ll worry about what the scan results will show later.

Be well!

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!