Category: Radiation Therapy

Month 179 – Urologist Discussion

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Radiation Therapy1 Comment

Well, that went about as I expected.

In a nutshell, we’re punting the ball another three months down the road.

The doctor commented on the continuing rise in my PSA and said after consulting with the doctor who saw me last time, said that he wanted to recheck my PSA in six months and “wait a year” for another PSMA PET scan. I should have asked for clarification on that, but I think he was referring to waiting a year after my last PSMA PET scan in March 2025 and not a year from today.

I wasn’t entirely comfortable with waiting another six months, so we agreed to test PSA again in December (three months after my September test) and go from there.

We also talked about spot radiation if anything pops up on the scan. He seemed a bit reluctant for that to be an option, and went straight to starting hormone therapy. It’s as though he was making the transition from curative options to management options, and, to be perfectly honest, I believe I made that transition in my own mind once the salvage radiation failed. That doesn’t mean that I wouldn’t try zapping a lesion or two if they popped up on the scan depending on location (no more zapping to the pelvis and risking further bowel complications).

We did talk about my experience with hormone therapy during the salvage radiation, and the timing of starting it this time around. In that discussion, he brought up the topic of bringing in a medical oncologist at some point depending on the scan results and my PSA test results.

We talked at length about my urinary frequency and some options for that. He suggested some pelvic floor therapy might be beneficial, so I said I’d be willing to give that a try.

Overall, I’m okay with where we’re at and the planned course of action for now. I’ll go for my PSA test in early December, and if there’s another significant jump, I’ll press for the PSMA PET scan to be done sooner rather than later.

My next scheduled urologist appointment is 30 December 2025.

Be well!

Header image: Sunset, Imperial Beach, California

Day 5,214 – Doctor Visit

On By DanIn Hormone Therapy, imaging, Prostate Cancer, Radiation Therapy1 Comment

You may have overachieved when your doctor asks, “Are you a urologist?”

I had a good meeting with the real urologist this morning, and it appears that he actually read the questions I sent to him in advance. That made the discussion easier.

First on my question list was whether a PSMA PET scan was warranted. He agreed that it was, and we’re going to try to get that scheduled soon. He thought that, with my PSA at 0.94 ng/mL, there would be a better chance of actually finding something this time. The only concern is that the VA has required a bone scan ahead of the PSMA PET scan in the past, and he’s going to see if we can skip that. It may take several days for the schedulers to call me.

We did discuss the possibility of further radiation if a lesion is found away from the pelvis. I mentioned that I had had blood in my stools and mild radiation proctitis discovered (and addressed) during my recent colonoscopy. He was not keen on further radiation to the pelvis under those circumstances. Neither am I.

My next question was about the timing of beginning androgen deprivation therapy (ADT). He was pretty squishy on the timing, not knowing exactly where we’re at. I mentioned that, a year ago, the urologist told me that we’d start when my PSA hit 2.0 ng/mL, but the medical oncologist suggested holding off until metastasis. He generally agreed with the concept of starting it later so that the cancer doesn’t become resistant to it prematurely, with one caveat.

He seemed to give more weight to my PSA doubling time than did other doctors, and that’s when he asked me if I was a urologist. I had presented him my graph showing my PSA progression, and it showed my PSA doubling time. “How did you know how to calculate it?” I told him that I used the Memorial Sloan-Kettering PSA doubling time calculator. To him, my PSADT of 9 months was creeping into “concerning” territory, and might make him a little more inclined to start ADT earlier.

I asked him, “At what point do we call this metastatic disease?” and, “When should we get a medical oncologist (MO) involved?” To the first, he said that all we know is prostate cancer is somewhere in my body, but wouldn’t go so far as to call it metastatic yet. To the second, he was open to brining in a MO if the results of the PSMA PET scan warranted it.

We agreed to the following plan:

  • Get a PSMA PET scan and meet again in six weeks to review the results.
  • Get an updated PSA test before the six week review.
  • Let the results of the scan determine if we get the MO involved at that point.

I have the six-week follow-up appointment scheduled for 1 April 2025. My concern is getting the PSMA PET scan scheduled and completed before then. If I need a bone scan in advance of it, that may complicate or delay the PSMA PET scheduling further. If push comes to shove, I already had an appointment scheduled with urology on 8 May 2025, so that’s not that much of a delay if we can’t get everything scheduled before 1 April. 2025.

It was a productive meeting from my perspective, without any surprises.

More to come as we get things scheduled.

Header image: Cuyamaca Rancho State Park, California

Month 164 – Prostate Cancer Update

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence9 Comments

To my regular readers, you may want to skip this post. This is a high-level update intended for my family and friends who don’t regularly follow this blog (gasp!), and it will be shared with them via my personal social media accounts. If you’re new here, welcome. Feel free to read away.

It’s been a while since I’ve provided any detailed update on what’s going on in the world of my prostate cancer, so here goes.

We last left our hero two years ago as he began 35 sessions of salvage radiation therapy on 7 July 2022 in attempt to kill off his recurrent prostate cancer after his surgery in January 2011 ultimately failed. Unfortunately, those little cancer cells have proved themselves to be quite resilient, and the salvage radiation therapy has failed, too. Bummer.

We know this by tracking my prostate-specific antigens (PSA) on a regular basis. After the surgery, my PSA level should have dropped to undetectable (zero) because there was no prostate left to produce the PSA. But the PSA can live on in the cancer cells even without a prostate, and that’s how we know the cancer is still there.

After the radiation, my PSA should have dropped substantially, and it did, at least initially. But about 15 months after the radiation ended, my PSA was on the rise again. It rose enough to the surpass the PSA level when we started the radiation. In May 2024, it continued its upward climb to 0.52 ng/mL, the highest it’s been since the surgery. (In the grand scheme of things, it’s still a low value that many fellow prostate cancer patients would love to have, but the fact that it’s doubling about every six months is a concern.)

There is a relatively new scan that can detect prostate cancer cells at fairly low PSA levels. It works best when the PSA is close to 1.0 ng/mL, but it has detected prostate cancer about 30% of the time at PSA levels in the 0.2–0.3 ng/mL range. I went for this PSMA PET scan in January when my PSA was 0.37 ng/mL, and the scan failed to detect anything.

On the one hand, that’s great because there were no signs of metastasis and no evidence of prostate cancer. But on the other hand, we need to know where the cancer is located and what it’s up to in order to plan our next treatment options. Because it didn’t reveal its ugly head, we can’t make any meaningful treatment decisions right now.

If there are one or two small lesions someplace, we may be able to radiate them again depending on their size and location. But if there aren’t any distinct lesions and my PSA continues to increase, that’s likely the result of micrometastases and that would require a systemic treatment approach (e.g., hormone therapy, immunotherapy, chemotherapy, or any combination thereof).

After reviewing my May PSA results with the urologist, we agreed to punt for six months and do another PSA test in late October. I know that seems counterintuitive—letting the cancer continue to grow without taking action—but there’s a reason for it. I’m predicting my PSA at that point will be in the 0.75–1.0 ng/mL range in October, and we’ll do another PSMA PET scan to see if we can determine what’s going on and then plan from there.

Up until this year, all of my conversations have been with the urologist and radiation oncologist. In February, I met with a medical oncologist for the first time because they’re the ones who deal with the systemic treatments.

Based on my conversations with the urologist and medical oncologist, the next logical treatment option is hormone therapy. Prostate cancer lives off of testosterone, so if we kill off the testosterone, we slow the growth of the cancer cells. (Hormone therapy is not curative, however.) But the timing of starting hormone therapy is important.

If we started the hormone therapy now, it would rapidly knock my PSA down so far that it would make it next to impossible to do the PSMA PET scan in November and get any meaningful results.

The other problem with starting hormone therapy too early is that the prostate cancer can become hormone resistant much in the same way that bacteria can become resistant to antibiotics. Start the treatment too early, and you’ll lose its effectiveness when you really need it later.

There seemed to be a differing of opinions between the urologist and the medical oncologist as to what would trigger the start of hormone therapy. The urologist would hold off until there’s evidence of metastasis; the medical oncologist suggested we’d start when my PSA hit 2.0 ng/mL. We can figure that out when the time comes, but both agreed that hormone therapy (and other therapies) can keep me around another 10–15 years (or more).

Of course, my quality of life may be diminished as a result of the treatments. Hormone therapy can come with a whole host of unpleasant side effects such as fatigue, muscle loss, weight gain, loss of libido, hot flashes, etc. No need to rush into that Disneyland of experiences.

Physically, I am feeling fine. I’m completely asymptomatic when it comes to the cancer, but the side effects from the surgery and radiation are present and are a nuisance more than anything. Psychologically, though, it’s been a bit of an emotional roller coaster ride as I go from PSA test to PSA test, and failed treatment option to failed treatment option. We’re closing in on 14 years since diagnosis, and it does get tiring.

One of my regular blog readers and my urologist both suggested that, at this point, I look at my prostate cancer more as a chronic illness than as a life-threatening disease. I’m still trying to embrace that perspective and, even if I do, the worry will never go away.

There you have it. The latest and greatest in this adventure of living with prostate cancer. Follow along if you want to see my monthly updates, and we’ll probably know more right around the holidays.

Be well!

Header image: Lake Michigan coastline from the John Hancock Center, Chicago, Illinois

Month 162 – Urologist Visit

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence4 Comments

The short version from yesterday’s appointment with the urologist (who happens to be the Urology Department head):

Kick the proverbial can(cer) six months down the road and retest PSA then.

Generally speaking, I’m okay with that approach. I mean, really, what else is there to do at this point? We don’t have sufficient data points to make any definitive treatment decisions right now. Of course, I may feel differently after sleeping on this for a few nights.

I have to admit that it was a challenging meeting because the doctor just wanted to rapid-fire through all the discussion points and it was difficult to get my questions out. In the end, though, I prevailed.

She was blasé about the increase in my PSA, saying it went up “a little bit.” (A 41% increase in my mind is a tad beyond “a little bit,” but what do I know?) She didn’t see much value in doing another PSMA PET scan right now because a scan with a PSA of 0.52 ng/mL has about a 50-50 chance of detecting anything. That somewhat aligns with what the medical oncologist (MO) said in February—that it would be better to wait until my PSA was at least 0.7 or 0.8 before doing another scan.

My SWAG (scientific wild-assed guess) is that my PSA will be between 0.75 ng/mL and 1.1 ng/mL in November based on the average increases in my PSA over the last four readings and my PSA doubling time. (Bookmark this prediction for future reference! 😀)

We did talk about androgen deprivation therapy. Her biggest concern was that starting too early would just accelerate the eventual likelihood of resistance later on when ADT is needed the most, so she wouldn’t start ADT until there’s confirmed metastasis. (By comparison, the MO suggested holding off until my PSA hit 2.0 ng/mL.) I did ask if starting ADT early delays metastasis and she said it didn’t, which I thought was interesting.

We talked about whether it would be a monotherapy or a combination therapy, and she suspected we would start with just a monotherapy. She acknowledged that there are several studies out there showing that a combination therapy may lead to better outcomes but, in her mind, they weren’t persuasive enough to launch straight into combination therapy. However, she did say that there are certain circumstances where it may make sense, one of which was if the metastases was in the spine.

I asked about possible radiation of localized lesions and she was not all that enthusiastic about the idea. Her biggest concern was about going through radiation twice and whether that was a wise thing given what damage it may do to my body. “I’d have to defer to the radiation oncologist to make that assessment,” she said. Her fear was additional radiation damage / side effects, and I would have that same concern, too. I would have to consider very carefully zapping anywhere in the pelvic area again given the changes I have already experienced in my bowel habits.

Even if the scan showed one or two lesions that could be zapped, she would also start ADT because “it’s pretty much guaranteed that there would be cancer elsewhere that didn’t light up on the scan.” That makes sense.

Lastly, given where I’m at in this advanced prostate cancer no-man’s land, I was curious how she would label or stage my cancer. With no evidence of metastases on the last scan, she would still have me at Stage 2. (See the American Cancer Society staging of prostate cancer HERE.)

Of course, in my mind, I turned to the actual definition of metastasis:

the spread of a disease-producing agency (such as cancer cells) from the initial or primary site of disease to another part of the body

I don’t have a prostate (initial or primary site) but I do have evidence of cancer, so it must be in “another part of the body.” By that definition, it must mean that I’m metastatic, right? (Yeah, I know… Nothing in the prostate cancer world is that clear.)

I asked the question about staging more as an academic exercise because it really doesn’t matter much what the label or stage is. All I know is that I’m living with this bug growing inside me.

One of my blog followers, Phil, recently commented that his oncologist considered prostate cancer to be more of a chronic illness than a terminal illness, and that stuck with me. I mentioned that to the doctor, and she embraced that view wholeheartedly, telling me that patients like me can be kept around for many years—even decades—and the disease can be managed like hypertension or diabetes.

Intellectually, I already knew that. But, after 13+ years, it’s quite the mental leap to jump from, “I have the Big C and it continues to grow unabated,” to, “Cancer, schmancer. It’s like arthritis in my big toe. No big deal.” But it is a leap I’m trying to make.

You would expect that, after 13+ years of testing, waiting for results, reviewing results, and planning next steps, I’d be used to it by now. It’s routine. But I’m finding it to be more and more emotionally draining with each cycle as the uncertainty drags on. Perhaps it’s because I’m coming to terms with failed treatments when I had hopes for better outcomes, or perhaps it’s because I’m back in the wait-and-see mode. Or maybe it’s just the cumulative effect of being on this roller coaster for so long.

On the positive side, I know that I’ve been blessed. Many fellow prostate cancer patients would love to have their PSAs be at my level; my quality of life is pretty good considering all that my body has been through; and—most important—I’m still here 13+ years after diagnosis.

On a somewhat related note, I finally got my baseline testosterone results back: 424 ng/dL. That was taken almost two years to the day after receiving my six-month Eligard shot in advance of salvage radiation therapy, so I’m guessing that any effect the Eligard may have had on my testosterone level has worn off by now.

From what I can tell, that’s a decent / normal number for a 66-year-old guy.

At least we have a starting point for reference now.

Well, that’s it for this post. Time to go out and play for six months. Be well!

What’s next:

  • Week of 28 October – Get PSA test
  • 4 November – Physical with primary care physician
  • 14 November – Appointment with urologist

Header Image: La Jolla Coast, San Diego, California

Day 4,923 – PSA Results

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence6 Comments

No surprise here. In my spreadsheet, I put a placeholder value of 0.50 ng/mL for this PSA test based on the previous trend, and the actual result came in slightly higher at 0.52 ng/mL.

The PSA Doubling Time is dropping as well. Using the last five readings and the Memorial Sloan-Kettering PSA Doubling Time calculator, my PSADT was:

  • 6.7 months on 6 December 2023
  • 6.2 months on 19 January 2024
  • 5.1 months on 1 May 2024

It seems safe to say that the salvage radiation therapy failed to do the trick.

I am trying to describe my reaction to this hour-old news. I guess words that I might use would be: numb, indifferent, resigned. I don’t know. It’s a bit weird. I certainly had zero expectation that my PSA would go down or even hold steady given the previous trend.

You may recall the conversation with the medical oncologist suggested that we monitor and do another PSMA PET scan in six months, which would make it August. The question now is, based on these results, do we stick with that plan? Or do we move to the discussion on the type of androgen deprivation therapy and the timing of ADT?

I did ask the phlebotomist if he was drawing blood for a testosterone baseline test and he said yes. I don’t see the results posted online yet (my record is still going through its once-a-day update as I type this).

Well, it’s after midnight. I’ll sleep on this and perhaps I’ll be a tad more focused in the morning after having processed this.

What’s next:

  • 9 May – Appointment with primary care physician (annual physical)
  • 14 May – Appointment with urologist

Header Image: Scenes from San Diego Bay, San Diego, California

Month 161 – Crappy Development

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects16 Comments

If you’ve been reading this blog from the beginning, you already know that no detail is spared in the telling of this prostate cancer tale. If you haven’t read some of the early, gory details, well, buckle up, Buttercup.

Let’s talk bowels and 💩.

BIOLOGY AHEAD

LAST CHANCE. If you don’t want to follow along, check out my travel website HERE or my photography website HERE.

One of the known possible long-term side effects of radiation when it comes to prostate cancer is issues with your rectum and bowels, and those side effects can manifest themselves years after the radiation was completed. (It’s been 19 months since my last zapping session in August 2022.)

Something has changed with my bowels in the last few months, and I’m wondering if this is the beginning of those side effects.

The engineer in me is trying to evaluate different variables to see if these changes could be the result of something else.

As a baseline, I used to have one bowel movement a day in the morning and I was good for the day. Also, I’m a creature of habit, and my diet really hasn’t changed at all, so that’s likely not a contributing factor.

One other thing is the timing of the onset of my symptoms. It’s about the same time that I started my daily walking regimen in earnest in February. I doubt they’re related, but it is noteworthy.

So what’s different? Well:

  • About half the time, I’m now having two to three bowel movements a day. One recent day, there were five over the course of the entire day.
  • My stools have changed from well-formed “logs” to thin, soft “snakes” or “ropes” that tend to fall apart.
  • I find myself having short periods where I’m quite gassy and flatulent without any likely dietary cause (e.g., not eating frijoles for breakfast, lunch, and dinner).

The silver lining in this cloud is that I haven’t had any increases in bowel urgency, so this is quite manageable at the moment. I will admit, though, that there have been a few times when I’ve been on my daily walks when I felt the need to pass gas, and I felt I was on the edge of getting more than I bargained for if I did. Luckily, no accidents yet.

I haven’t done a ton of research on this yet, but a study out of Sweden, Salvage radiotherapy after radical prostatectomy: functional outcomes in the LAPPRO trial after 8-year follow-up, looked at the long-term side effects of salvage radiation therapy. The summary of their conclusions on bowel function:

Fecal leakage was more common after radiotherapy as found in answers to question about ‘accidentally leaked liquid stool’ with 4.5% in Radiotherapy group versus 2.6% in Control group, ‘accidentally leaked liquid stool’ once a week or daily, Odds ratio (95% CI): 1.90 [1.38; 2.62]), ‘mucus from anus’, 6.8% versus 1.5% (4.14 [2.98; 5.76]), ‘leakage of feces in clothes’, 5.6% versus 2.4%, (2.18 [1.18; 4.04]), respectively in Radiotherapy and Control groups (Figures 2, 3A and 3B and Tables S2 and S3 in the Supplement). Bleeding from the anus was more common after salvage radiotherapy, 8.6% versus 1.2% in control (3.21 [2.32; 4.44]) as was flatulence, 25% versus 14% (1.82 [1.40; 2.37]), whereas distress due to bowel symptoms did not differ, 7.8% versus 6% (1.27 [0.90; 1.80]). Defecation urgency was more common in the group given salvage radiotherapy as reported in answers to questions about need ‘to rush to the toilet’, 14% versus 5% (3.22 [2.46; 4.21]), ‘open your bowels again within 1 hour’, 17% versus 9.4% (1.53 [1.18; 1.98]). There was no statistically significant difference in ‘how often do your open your bowels’, 3% versus 2.5% (1.23 [0.92; 1.64]).

Carlsson, S., Bock, D., Lantz, A., Angenete, E., Koss Modig, K., Hugosson, J., Bjartell, A., Steineck, G., Wiklund, P., & Haglind, E. . (2023). Salvage radiotherapy after radical prostatectomy: functional outcomes in the LAPPRO trial after 8-year follow-up. Scandinavian Journal of Urology, 58, 11–19. https://doi.org/10.2340/sju.v58.7318

Another silver lining: no fecal leakage, mucus, or rectal bleeding so far. Woo-hoo!

Needless to say, this will be part of my conversation with my primary care physician on 9 May and with the urologist on 14 May. I’ll likely rope the radiation oncologist into the conversation, too.

I was reluctant to talk about this earlier because I wasn’t sure if this was a temporary thing or something longer term. This has been pretty persistent for about two months now, so I thought it was time to talk about it. As long as things don’t worsen, I can live with what’s happening right now (although I would prefer that I didn’t have to if I’m being perfectly honest).

I’ll have to admit that I’ve been feeling a general sense of anger and perhaps regret about this whole situation.

The source of those emotions isn’t from the side effects themselves, per se, but rather from this entire process that tends to move patients in the direction of what is considered to be overtreatment.

I may flesh this out in a longer, separate blog post one day, but when I see the likes of Dr. Scholz and others beginning to say, “Hmm. Maybe we should let the PSA rise so we can find out where the cancer is at before we start the treatments that could have life-long side effects adversely impacting the quality of life,” I get annoyed. Annoyed because I’m beginning to agree with that line of thought more and more, instead of the old, “It’s better to attack it while the PSA is low even though we don’t know exactly what’s going on.”

It’s frustrating because, my gut instinct all along was to delay until we knew where the cancer’s location, and I let the more rapid increases in my PSA, my shortening PSA doubling time, and the current “industry” guidance to act sooner rather than later get the better of me.

The frustration will continue as I move into the next chapter. I’ve been looking for studies on the best time to start androgen deprivation therapy (ADT) for someone in my situation and, from what I’ve seen so far, the guidance seems to run the full spectrum of starting early or delaying for years. Throw in the decision of whether it’s just ADT or ADT plus some sort of antiandrogen therapy, too.

I get that there are advances in research and technologies and that things are constantly changing. But at this point, I’d be happy for a clear path forward without adding additional side effects. (But I’m experienced and knowledgeable enough to know that’s just a pipe dream at this point.)

Rant over. Time to invest in some toilet paper company stock.

What’s next?

  • 1 May – PSA test
  • 9 May – Appointment with primary care (routine physical)
  • 14 May – Appointment with urologist.
  • TBD – Another PSMA PET scan if my PSA warrants it OR wait another three months for the next PSA test.

Month 159 – Meeting with Urologist

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence3 Comments

Today’s meeting with the urologist went about as I expected it would. In a nutshell, we agreed to punt for another three months and see where we’re at with a new PSA test at that time.

We talked about the clean PSMA PET scan results and the fact that we remain in this inconclusive gray area right now that doesn’t bode well for making decisions about the next steps. He did suggest that I could start ADT now if I wanted to do so, and he debated about whether it would be appropriate to start ADT with abiraterone. He leaned toward just starting without abiraterone if ADT is what I wanted to do, but I also sensed that he felt no need to rush into this given the negative scan results.

One interesting comment that he made (and I wish I had taken better notes) was along the lines of ADT alone has not been shown to extend life expectancy. The unsaid implication was, “Why go through the side effects of ADT now if studies show there’s no discernable difference in the outcome?” That’s something that I need to dig into a little more.

One interesting thing that’s popped up in my conversations with others in prostate cancer forums or here is testosterone level testing. In all my years of being treated, my testosterone level has never been tested, so we talked about that. It’s something that we can do just prior to starting ADT to establish a baseline reference point.

I mentioned my email conversation with the radiation oncologist, and talked about the possibility of zapping a lesion should it show up on a PSMA PET scan in the future. The urologist seemed a bit indifferent to that approach (probably an occupational hazard).

During the conversation, I mentioned that my PSA doubling time using the last four values was at just over six months, and he commented that that was “not insignificant.”

We did discuss whether there was value in knowing where the cancer was located at this point, or to just know that the cancer is somewhere and proceed with systemic treatment without knowing its location. My concern is that starting ADT would make finding the location next to impossible on a PSMA PET scan if my PSA is knocked down to near zero.

He kept using the term “metastatic” throughout the conversation which, I suppose, is technically correct. If the cancer is someplace other than where it started, it’s metastatic. But I’ve also learned that there is a lot of gray area in the prostate cancer world when it comes to classifying how and what your cancer is.

I also asked for a consult with a medical oncologist to get his/her insights on where I’m at and what should be done next and he was going to put that request in for the consult.

I have a three-month follow-up appointment and PSA test scheduled for 14 May 2024, so the saga continues.

About an hour after I returned home from my appointment, the PCRI posted this very timely video on micro-metastatic prostate cancer.

I’ll probably publish this video as a stand-alone post so it’s easier to find.

Header Image: La Jolla Shoreline, La Jolla, California

Day 4,820 – PSA Results

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence2 Comments

Okay. I got antsy and went for my PSA test on Friday instead of next week. As expected, my PSA increased from 0.33 ng/mL on 6 December 2023 to 0.37 ng/mL on 19 January 2024.

The silver lining in that cloud is that the rate of increase slowed a bit and it didn’t increase as much as I expected it would.

Sometimes, I get too nerdy for my own good. There was a 91% increase between the May and October readings, and there was a 57% increase between the October and December readings, so I averaged the two increases (74%) and projected that this increase would land me at just over 0.5 ng/mL. This increase ended up being just 12% over the previous December reading. Fickle PSA.

I ran the numbers through the Memorial Sloan-Kettering PSA Doubling Time calculator again, using the five values from March 2023 (0.13) on. My PSA doubling time dropped from 6.7 months to 6.2 months, and my PSA velocity increased from 0.2 ng/mL/yr to 0.3 ng/mL/yr since calculating it back in December.

I went for the test early because I really wanted to know the PSA value going into the PSMA PET scan that’s scheduled on 31 January 2024. Plus, if it dropped, I would have had time to ask the urologist if it was worth going ahead with the scan at a lower PSA level. (Remember, I went for a PSMA PET scan when my PSA was 0.22 ng/mL, and it didn’t show anything at that PSA level. Why subject myself to another dose of Gallium-68 if the outcome may not produce any useful information?)

My follow-up with the urologist to review the PSMA PET scan and PSA results is on 13 February, and we’ll map out what’s next from there.

So that’s the latest and greatest. More to come.

Header image: The famous Torrey Pines Golf Course, San Diego, California, home to the Farmers Insurance Open golf tournament

Day 4,776 – PSA Results (Not Good)

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence4 Comments

Well, 💩.

The suspense of not knowing what my PSA was up to was killing me, so I went a couple of days earlier than I planned to have my PSA test. I was expecting it to go up a bit, but I wasn’t expecting it to leap a tall building in a single bound.

My PSA jumped from 0.21 ng/mL on 31 October to 0.33 ng/mL on 6 December, a 57% increase in five weeks. Ugh. Using the four PSA values from this year and Memorial Sloan Kettering PSA Doubling Time calculator, my PSADT is 6.7 months.

I’d say it’s safe to conclude that the salvage radiation therapy missed the mark, but I’ll confirm that with an in-person appointment with the urologist on Thursday, 14 December and with the radiation oncologist via email.

I’m writing this late on Thursday night, about 20 minutes after seeing the results online, so I’m still shocked and processing it all. I’ll wrap this post up in the morning…

Back at the keyboard Friday morning after a somewhat fitful night of sleep…

Needless to say, this was (and still is) a bit of a gut-punch for me to see the PSA increase so rapidly. It’s definitely got me concerned and wondering where the cancer is if the radiation didn’t even make a dent in it.

So what’s next? I don’t know. I suspect these would be a few possibilities:

First, maybe let the PSA continue to rise a little more until it’s over 0.5 ng/mL but less than 1.0 ng/mL to give a PSMA PET scan a better chance of picking up where the cancer is located. At 1.0 ng/mL, PSMA PET scans can find the cancer about 90% of the time.

If there are only a couple of localized lesions, we may be able to radiate them.

Second, I’m sure androgen deprivation therapy (ADT) is definitely on the horizon, whether we do a scan and radiation or not. My only question would be the timing of the ADT. If it’s given before a scan, would that make it more difficult for the scan to pick up the lesions? I don’t know.

Last, Dr. Mark Scholz of the Prostate Cancer Research Institute, recently posted a video where he talked about a shift in how they approach treating advanced prostate cancer. (I’ll post the video in a separate post.)

Traditionally, treatments were offered sequentially. You’d start with hormone therapy, and when the cancer became resistant, you shifted to a different type of hormone therapy. When that failed, you would move into chemotherapy, a PARP inhibitor (immunotherapy), injectable radiation, and finally clinical trials.

There is research showing that combination therapies may be more effective in staving off the cancer. Instead of just starting out with ADT, it may make sense to combine ADT with radiation or ADT with chemotherapy right out the gate. Yes, there may be increased immediate side effects from the dual treatment, but early studies are showing higher cure rates and longer survival. Additionally, if the combined treatments are successful, this may lead to a better long-term quality of life because you may be able to be taken off ADT.

My appointment with the urologist is on Thursday, 14 December, and you bet I’ll have a ton of questions ready. One of them will be about getting a full-blown medical oncologist who specializes in prostate cancer involved at this point.

In the meantime, I’m going to have to start learning the language of advanced prostate cancer. There are so many different drugs and treatments with weird names that don’t really indicate what they do or how they’re used that it’s tough to keep them straight. Perhaps a spreadsheet may be in order…

I am trying to look for the silver lining in the cloud. I guess that would be that my PSA is still quite low. But the dark part of the cloud is the fact that I’m probably entering the phase where the treatments and their side effects will eventually be worse than the disease when it comes to daily quality of life. I tolerated the six-month dose of Eligard in 2022 pretty well, but it wasn’t without side effects. I guess I’ll cross that bridge when I get to it.

Oh. And I’m open to any and all insights from those who have traveled this path ahead of me.

Well, time to get out of the house and try to put this out of my mind for a brief period. (Translation: Escapism.)

Rising PSA After Prostatectomy – PCRI Video

On By DanIn imaging, Prostate Cancer, Radiation Therapy1 Comment

Here is another informative video from the Prostate Cancer Research Institute and Dr. Scholz. It hit too close to home for me, as it describes the dilemma I faced in deciding when to initiate salvage radiation therapy.

Perhaps the key point that Dr. Scholz makes (at 6:08 in the video) is that there’s “a huge advantage of knowing where the cancer is and allowing the radiation therapist to target that spot” as it relates to a newer approach of letting the PSA rise so that modern imaging can determine the location(s).

Later in the video at the 9:40 mark, he goes on to say:

It’s quite tempting in many of the cases that I see to allow the PSA to go a little bit higher knowing that that 0.5 threshold [used by radiation therapists] was set at a time when we didn’t have scans and we didn’t know where the cancer was. There’s such an advantage of knowing where the cancer is and allowing the radiation therapist to target the disease that I tend to liberalize a little bit and allow the PSAs to rise above 0.5 if necessary.

In other words, because of the value in knowing the location of the cancer that can lead to curative outcomes if properly targeted by the radiation therapist, it may be worth allowing the PSA to rise to the point where it can be detected on a scan.

I toyed with the idea of getting a second PSMA PET scan when my PSA hit 0.33 and 0.36, but because it was rising rapidly and because I knew it could take two to four months to get another PSMA PET scan scheduled, I opted to act and go ahead with the salvage radiation therapy. I do have to question if it may have been wise to do the second scan so the RO knew exactly where to aim because, with my PSA rising again, we may have missed our mark.

Will I dwell on that? Nope. I made the best decision I could with the information available at the time.

The bottom line is that we all have to assess our own risk levels and be comfortable with our decisions.