Day 3,819 – Doctor’s Visit

The dreaded tools of the DRE trade.

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.

Instructions for PSMA Referral

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.

More to monitor and report on going forward.

That’s it for this post.

Be well!

Day 3,910 – Bone Scan Results

As a baby boomer, I grew up with Spock. Both of them.

First, there was Dr. Benjamin Spock, the noted pediatrician who told my parents—and millions of other parents—how to raise and care for their kids. Then, of course, there was the Star Trek Spock, whose existence was rooted in Vulcan logic.

Now I’m not a Trekkie, but if you’ve read any part of this blog, you do know that facts, figures, and logic are high on my priority list, too. I thought, “What better way is there to outline the possible scenarios and decisions that are ahead of me than to put them all in a flow chart.” So here goes:

So let’s step through this.

We start with the CT and Bone scans that happened over the last two weeks. The first question is, “Did those scans determine the location of the prostate cancer (PCa)?”

If the answer is yes, then the next question is, “Was the prostate cancer in the prostate bed and/or pelvis?”

PCa in Prostate Bed/Pelvis

If the answer is yes, the PCa is in the prostate bed and/or pelvis, then Salvage Radiation Therapy (SRT) with or without Androgen Deprivation Therapy (ADT) (Hormone therapy) offers the last possible chance of a true cure. Of course, there are risks associated with SRT that would impact your daily quality of life: bowel control, bladder control, and lack of sexual function. Additionally, depending on which study you look at, SRT may be successful only 30% to 70% of the time. (Green bubble above.)

PCa is Not in Prostate Bed/Pelvis

But if the answer is no, the PCa is outside of the prostate bed and pelvis, that means the PCa is now distant and likely metastasized. If that’s the case, there is no cure and the PCa can only be managed with hormone therapy and perhaps chemotherapy. (Orange bubble above.)

CT and Bone Scans do not Locate the Prostate Cancer

We’ve talked at some length that neither the CT scan nor the bone scan have the sensitivity to pick up the cancer’s location based on my PSA level of 0.21 ng/mL. It was very likely that neither would pick up the cancer at that first decision point on the flow chart, so further investigation is required by using the Axumin or PSMA PET scan.

CT and Bone Scan Results

In fact, neither the CT nor the bone scan picked up the location of the cancer:

No definite scintigraphic evidence of metastatic bone disease and no evidence of a widespread osseous process

So that’s actually good news with the bone scan. It shows that it has not metastasized to the bones, which is definitely a good thing. (Or, at least if there is metastasis to the bones, it’s at a level that’s unable to be picked up by the sensitivity of the scan.)

Next Steps

We follow my red arrows above and run the Axumin or PSMA PET scans (or both) to see if either of those can pick up the location of the cancer. I’ll have that discussion with the urologist on 3 August 2021, and we’ll see when we can get them on the calendar.

If the Axumin and/or PSMA find the cancer in the prostate bed/pelvis, then we go back to the section above and land on SRT as the option. But if it’s found outside the prostate bed/pelvis, then we go back to the other section where we just manage with ADT. (If the lesion outside the pelvis is well-defined, it may be something that could be zapped in its location. Something to explore.)

If the Axumin or PSMA PET scan cannot locate the PCa, then things get fuzzy fast.

Sure, we could go ahead and blindly complete the salvage radiation therapy, hoping that we’re zapping in the correct place. Or, we could continue to monitor for a while longer and then retest to see if the cancer can be pinpointed.

This may have been a bit of an oversimplification of what’s ahead for me, but I’m hoping that it makes sense to you.

Be well!

Watch “Rising PSA: How Soon Should You Get a Scan? | Thomas Hope, MD & Mark Moyad, MD | 2021 PCRI” on YouTube

Wow. This could not be more applicable to my current circumstances and certainly gives me food for thought.

Day 3,869 – PSA, Imaging, and Salvage Radiation

Today was a tough day. The news of my PSA increasing to 0.21 ng/ml weighed heavily on me throughout the day. It even made me a little snippy in a meeting this morning, as my tolerance for trivial bullsh*t decreased to an all-time low. Oh well. They’ll get over it.

Long-time readers of this blog already know that I’ve delayed starting salvage radiation therapy because I’m reluctant to incur the short- and long-term side effects of radiation without having a higher degree of confidence that we’re actually zapping in the correct location(s)—zapping the cancer itself.

Of course, the current state of imaging for prostate cancer generally sucks, but it is getting better with advances like PSMA PET scans using 68Ga-PSMA-11 where prostate cancer can be located much earlier and much more accurately than using previous technologies such as bone scans. But even 68Ga PSMA PET scans have their limitations.

One of the greatest challenges (gambles?) in deciding when to start salvage radiation therapy is the timing. Most will argue the earlier, the better. Statistics show that in most cases, the cancer is still in the prostate bed or pelvic region, so the radiation oncologists start blindly zapping those regions hoping the statistics are correct. But the cancer could have already spread to more remote locations.

With my PSA doubling time in the 4-5 year range, my team and I have decided to hold off on salvage radiation therapy and, in so doing, I’ve avoided any radiation side effects for five years giving me a high quality of life during that time. That has value to me. Of course, none of us know whether the little buggers have been hanging out in the prostate bed during that time (like statistics would show), or if they’ve gone on one of their own infamous road trips and have started spreading.

One of the things that I’ve been trying to determine for months now is at what PSA level can the Ga68 PSMA PET scan begin to reliably pick up prostate cancer. The answer typically was in the 1.0 to 2.0 range for the PSA. With a PSA a fraction of that (0.21) the PSMA PET scan really wouldn’t be a reliable tool for me yet. It’s not a completely worthless tool, but there are decent chances that I could come away with a false negative result.

Tonight, I stumbled across this paper that provided some insights: Assessment of 68Ga-PSMA-11 PET Accuracy in Localizing Recurrent Prostate Cancer: A Prospective Single-Arm Clinical Trial.

The chart below taken from the paper was exactly what I was looking for and more. First, it shows the number of cases where patients with an increasing PSA after prostatectomy have positive results based on their PSA level. For those with PSAs less than 0.5 ng/ml (me), the number of positive cases was only 38%. In other words, there’s about a one in three chance that the Ga68 PSMA PET will be able to locate the cancer at that PSA level. Not good odds, but better than zero.

To me, the really interesting thing about this chart is that it shows the location of where the PSMA PET scan found the cancer by PSA level.

Fendler WP, Calais J, Eiber M, Flavell RR, Mishoe A, Feng FY, Nguyen HG, Reiter RE, Rettig MB, Okamoto S, Emmett L, Zacho HD, Ilhan H, Wetter A, Rischpler C, Schoder H, Burger IA, Gartmann J, Smith R, Small EJ, Slavik R, Carroll PR, Herrmann K, Czernin J, Hope TA. Assessment of 68Ga-PSMA-11 PET Accuracy in Localizing Recurrent Prostate Cancer: A Prospective Single-Arm Clinical Trial. JAMA Oncol. 2019 Jun 1;5(6):856-863. doi: 10.1001/jamaoncol.2019.0096. PMID: 30920593; PMCID: PMC6567829.

You can see that more than half of the cancer in patients with PSAs below 0.5 were found either in the prostate bed or pelvic region, both of which should be very treatable with salvage radiation therapy.

However, once the cancer is in other the other regions—extrapelvic nonbone (other organs), bone, or multiple regions—the cancer becomes very difficult if not impossible to treat. At that point, it’s only managed.

Please keep in mind that those are my non-expert opinions that I will have to confirm with my medical team to make sure I’m interpreting things correctly.

You can see that, as your PSA increases above 0.5 ng/ml, the cancer was found more broadly in the study participants. By that, I mean the cancer had spread beyond the prostate bed and pelvic region. You can also see, however, that even with PSAs less than 0.5, the cancer has already spread elsewhere in about 40% of the patients in the study with that PSA level.

That’s the whole point of knowing this. If the cancer has already spread, there’s no sense in zapping the prostate bed or pelvis risking long-term radiation side effects adversely impacting quality of life for no gain whatsoever.

This is only one study with 635 patients, so I am taking the results above with a healthy dose of skepticism, and I’ll continue to do more research in the three weeks before my appointment. But this study will be a good conversation opener for the consultation.

Some of the questions that are on the top of my bald head are:

  • Should we run another PSA test to see if this was an outlier/anomaly like some of my previous PSA tests (I’ve been using the same lab all along)?
  • How much weight does PSA doubling time have now that we’ve crossed the 0.2 ng/ml threshold?
  • Would he support getting the Ga68 PSMA PET scan done at this PSA level?
  • If not, at what PSA level would he support getting the PSMA PET scan?
  • Would he be willing to give me a referral to get one done even if I have to pay for it myself?

Fortunately, the US Food and Drug Administration approved the Ga68 PSMA PET scan at the University of California Los Angeles (UCLA), and that would be a 2.5-3 hour drive for me to get up there to have the scan.

In the meantime, I’m going to have to reconcile in my own mind how high I’m going to let my PSA get before taking action, scan or not.

Lots of research, thinking, and soul-searching ahead. But be forewarned: My trivial B.S. tolerance level is way less than my PSA. 🙂

New guidelines for salvage radiation dimensions

It has always been troubling that only about half of all salvage radiation treatments after failure of radical prostatectomy are successful. Usually, only the prostate bed is treated. But sometimes recurrent patients (or those with persistently elevated PSA) receive salvage radiation to the pelvic lymph nodes as well, or subsequently. Radiation oncologists here in the […]

New guidelines for salvage radiation dimensions

A Decade Living with Prostate Cancer

One decade. 522 weeks. 3,654 days. 87,696 hours.

That’s how long I’ve been living with prostate cancer since being diagnosed on 11 November 2010. Of course, the operative phrase is “living with.”

The diagnosis was terrifying. The treatment decision was excruciating and exhausting. The surgery recovery was longer than expected with some complications along the way. The long-term side effects have been what were advertised at the beginning.

On the positive side, there were 54 months of undetectable PSA results to indicate the surgery had done the trick. Or so we thought.

When my first detectable PSA test came in five years ago, I was even more terrified and panicked than when I was initially diagnosed. It meant that my first line of defense had failed. Now I had fewer options to control or rid me of the cancer available to me.

My doctors convinced me that there was no need for immediate panic and that we could and should monitor my PSA before considering any action. My PSA fluctuated up and down, but had a slow but steady upward trend.

As my PSA continued to climb—passing several markers that are normally used to consider starting salvage radiation therapy—I continued to do nothing. I’ve been pretty steadfast in my reluctance to start zapping without knowing where the cancer is, and even some of the best new imaging techniques won’t pick up the cancer at my PSA levels.

With a PSA doubling time of four years, I’m comfortable with that decision. Heck. I’m still here five years after that initial detectable PSA reading, and ten years after my initial diagnosis.

We may find out a little more about my future direction next month when I go for my next PSA test just before Christmas. As I’ve learned (albeit slowly) over the last decade, don’t get too worked up about the results until you have them in hand. It just doesn’t do any good to speculate about the unknown. January will tell me whether I can continue the status quo or it’s finally time to take action.


If you asked me ten years ago when I started this blog (to keep family and friends informed in my pre-Facebook days) that I would still be doing this ten years later, I would have said you’re nuts. But here I am.

I’ve tried to inform and educate others about prostate cancer along the way, and to give insights to the newly diagnosed as to what you may encounter two, three, five, or ten years down the road. All the guys I spoke with pre-surgery had, themselves, only been less than a year out from their own surgery date. They had no long-term post-surgery insights to offer to me.

I’ve tried to inject a little dose of reality to those who, just like me, gleefully declared themselves to be “cancer-free” after a few undetectable PSA tests. “Not so fast.” My story is a reminder that there can be unexpected plot twists, even in the later chapters.

Along the way, I’ve met some wonderfully supportive men who have been through their own journey—some just virtually and some in person. Sadly, three of them have lost their battle with prostate cancer and they’re sorely missed.

It’s been a decade of living with prostate cancer. Living with. Let’s hope that I’m still around to write the blog post, “Two Decades Living with Prostate Cancer.”

Month 119 – Sidewalk Consult & Travel Tales

Sidewalk Consult

A few weeks ago, I ran into the radiation oncologist that I spoke with a while back outside the hospital where we both work. We started chatting and he recalled our conversation in the office and asked how I was doing.

I filled him in on my latest PSA results (0.14 ng/ml) and my PSA doubling time (48.9 months), letting him know that we punted the ball down the field until December to see what the next PSA would be. I could tell from his reaction that he would have been less supportive of that call. His preference is to start zapping at 0.10 ng/ml. But he also went into the discussion about how each case is unique and how each patients has a different risk tolerance level.

We also talked about some of the longer term side effects of salvage radiation therapy, and he confirmed that some of my urinary incontinence and ED issues could worsen post-radiation.

His wife came to pick him up and the conversation ended. I do appreciate that he was willing to have the conversation at all, let alone off the clock.

As I said, the plan is to get my next PSA taken just before Christmas with the follow-up appointment scheduled 5 January 2021.

Travel Tales

A while back I was checking my pay statement and noticed I had over four weeks of vacation on the books, which surprised me to a degree. Of course, with a global pandemic, I really didn’t have any opportunity to travel with pretty much everything locked down here in the United States.

I decided, though, that it was time to go on a trip, pandemic be damned. It had been nearly a year since I went anywhere.

The best way to be responsible in my travels was to load my camera in my car and head to some remote locations in a few of our national and state parks. That’s what I did and I was able to very easily maintain social distance 90+% of the time.

So I took a trip into Utah to visit its national parks—four of which I had never been to before. You can check out the details and photos of the trip here:

Utah’s National Parks

Enjoy!

Day 3,270 – Doctor Visit

Tuesday’s meeting with the urologist was a bit anticlimactic. In a nutshell, we’re returning to the four-month test cycle and we’ll see what the next test will bring in late January or early February before we do anything.

The doctor had no explanation for the swings in my PSA level from 0.13 to 0.10 to 0.16 and reminded me that there could be a margin of error on the readings. (But he couldn’t quantify what that +/- error might be using the assay that they’re using.) He mentioned that riding a bike, other mild “trauma” to the pelvic region, or sexual activity before a PSA test could affect the results. That’s something that I already knew, so I make it a point to avoid any of that for at least a week before the blood sample is drawn to avoid introducing that variable to the picture.

He also reminded me that the historical definition of biochemical recurrence has been 0.20 ng/ml and suggested that it was premature to start thinking about salvage radiation therapy. Even so, he acknowledged that my PSA is definitely trending upward and worthy of continued monitoring so that it “doesn’t get away from us.” He suggested it would be fine to retest in six months; I opted for four.

One of the reasons that he was so comfortable with a longer test cycle and continued monitoring was my lengthy PSA doubling time. He also talked about the possibility that this could be residual benign prostate tissue left behind after the surgery that could be causing the PSA to increase again.

I filled him in on the Ga-68 PSMA PET/CT scan trial going on at UCLA and the option to shell out $2,800 to have the scan done outside of the trial. We talked a little about the successful detection rates at my PSA levels, to which he replied, “You know more about it than I do.”

We also spoke briefly about the potential long-term side effects of salvage radiation therapy, as well as the success rates of having no evidence of disease five years later. Nothing new was learned there.

On the whole, I’m generally on board with this approach—for now. But I will say that, mentally, I prepared myself for the meeting to go in a different direction, so I’m still processing that. If I’m perfectly honest, I’m a teeny bit less confident that waiting another four months is appropriate.

It’s as though I’m taking another step on a tight rope with each successive PSA test. The further out I go, the more the rope sways and it’s just a question of how long I can maintain my balance. Can I make it all the way across, or will I lose my balance and tumble into the abyss of metastasis?

Sure, I can opt to use my emergency safety harness—salvage radiation therapy—at any time, but that comes with costs potentially impacting quality of life: increased incontinence, loss of sexual function, scarring from radiation, etc. And—guess what?—at the end of it, I’ll be back on another tightrope taking another step every 3-6 months with new tests to monitor the effectiveness of salvage radiation. (And there’s a 30%-70% chance that I’ll fall off that tight rope into the abyss, too, depending on which study you look at.)

The trick is knowing when to decide whether you should keep walking on the original tight rope or that it’s time to jump into the safety harness. That decision is complicated by your coaches on the ground yelling conflicting things at you. Coach Radiation Oncologist is yelling, “Use the harness!” and Coach Urologist is yelling, “Keep walking!” Your own mind, filled with reliable information you gathered from Dr. Google, is adding to the confusion. It can be maddening to try and sort through it all and make the best decision possible.

That thought led to the last point of discussion with the urologist on Tuesday. He acknowledged that the field of prostate cancer research is a very dynamic one, and that there’s often conflicting guidance as new therapies are being tested and new discoveries are made. He also reinforced that prostate cancer is an insidious disease in how it behaves and how challenging it can be to treat it.

Prostate cancer is not an “easy cancer.” Far from it.

Day 3,260 – Research Articles on Prostate Cancer

One of the cool things about working in a hospital is that I can access full versions of some of the scholarly articles on prostate cancer that are normally blocked to the public by their publishers. At the end of the day today, I pulled the full versions of each of these articles for a little light bedtime reading about salvage radiation therapy, toxicities, and imaging:

Long-term Outcome of Prostate Cancer Patients Who Exhibit Biochemical Failure Despite Salvage Radiation Therapy After Radical Prostatectomy.

Improved toxicity profile following high-dose postprostatectomy salvage radiation therapy with intensity-modulated radiation therapy.

Long-term outcomes after high-dose postprostatectomy salvage radiation treatment.

Multimodality Imaging of Prostate Cancer.

Salvage radiotherapy after radical prostatectomy: Long-term results of urinary incontinence, toxicity and treatment outcomes

Outcomes of salvage radiotherapy for recurrent prostate cancer after radical prostatectomy.

I skimmed a couple of them on the bus ride home this evening (as much as you can skim on a bouncing bus), and I’ll go through each in a little more detail before my appointment a week from tomorrow.

When I pull articles like this, I consider a few things when reading them:

  • When was the article published? Obviously, more recent is generally better, although you can’t discount data from earlier studies entirely.
  • What type of research was done? Was it a retrospective study of historical medical records or was it a full-blown trial?
  • How many patients were included in the study? Fewer patients (<100) may yield less reliable results than those that include several thousand.
  • Over what time period did the study look at patients? Studies that looked at records from the 1990’s into the early 2000’s will reflect the treatment options and technologies available at that time. Studies done more recently will reflect the impact of newer treatment options and technologies.
  • Who conducted or funded the study? Who’s conducting a study and how it’s paid for could, in theory, perhaps skew the results (e.g., Big Pharma wanting to push a new drug).

So I’ll be going through each article, gleaning whatever I think may be of value for the appointment, adding to my list of questions to be asked.

Please don’t ask me to share the full versions of the articles here or elsewhere. Not only am I cancer-averse, I’m litigation averse. I’m not keen on a copyright infringement lawsuit because I posted something on this blog/website that I didn’t have permission to do. 🙂

That said, I may try to summarize some of the findings in future posts, with full attribution of any quotes, of course.

Off to read a bedtime story or two…

Month 107 – Looking Ahead

A little over a week ago, I hopped online around 10 p.m., checked my latest PSA results, and wrote my last blog post. None of that made for a good bedtime story.

The next day, I was exhausted from not sleeping well after receiving the news—so exhausted that I skipped out from work about an hour and a half early so I could go home and rest. Ever since then, I’ve been fine. I’ve accepted the new number and the fact that, once again, the only thing that I can control is how I react to it. In my heart, I expected the number to go up from the last test, and it did.

I did take a little time to search for some newer articles about salvage radiation therapy but they, like the PSA results, didn’t make for good bedtime reading either, so I put that on hold for now. I’ll be working on my list of questions for the doctor on 22 October, and we’ll go from there.

I’m pretty sure the writing is on the wall that that salvage radiation is in my future. It will take a while to get appointments set up for the radiation oncologist and to do any imaging that we can, and when you throw in the approaching holidays, I just don’t see radiation starting before the end of the year. I could be wrong. (Or, if things do happen quickly, I may just force the start to the beginning of the new year. Who wants to be getting zapped through the holidays? Seriously.)

In the mean time, I’m doing okay. Really. Just one appointment and test result at a time…