Author: Dan

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.

Day 4,747 – Update

On By DanIn Prostate Cancer3 Comments

Just a quick update…

The urologist agreed with the radiation oncologist’s recommendation for another PSA test just before my 14 December 2023 appointment, and put the order in the system for me to have the test. I’ll probably try to have the blood drawn on 8 December or so.

I met with my primary care physician today. He had seen my most recent PSA test, and thought the 0.21 ng/mL reading was pretty good post-radiation. But it was clear to me that he didn’t compare that to the previous test and, when I told him it nearly doubled, he agreed that it was a concern.

Regarding my cardiac mystery, he ordered an echocardiogram and a cardiac stress test, and the cardiac department schedulers should call me next week to set that up.

I had worn a Zio patch heart rhythm monitor for two weeks ending this past Monday, 6 November. I shipped the device to the facility that analyzes it that same afternoon, and they just received it this morning according to the shipping tracking number. The doctor said it can take a week to ten days for the data to be downloaded, analyzed by cardiologists, and a report generated.

I’m still having occasional and usually brief episodes (< 10 minutes) of what I would call minor palpitations or fluttering, so I’ll have to keep an eye on that while all of this is going on.

So, we’re back in the test and wait phase for now. Stay tuned for more.

Day 4,742 – RO Response

On By DanIn Prostate Cancer, Recurrence4 Comments

I emailed the radiation oncologist yesterday and his response at 6:13 a.m. Saturday 😮 was about what I expected:

  • He agreed with another PSA test and recommended doing it in six weeks (mid-December).
  • Reminded me that the current PSA of 0.21 ng/mL is still below the starting point of 0.36 ng/mL at the beginning of radiation, so in his eyes, this is technically not progression, but…
  • He also agreed that the “trajectory means we need to keep a closer eye on it.”

I emailed the urologist to request another PSA test before our appointment on 14 December before I received the response from the RO, and I’m awaiting the urologist’s response. I’ll forward the RO’s recommendation to reinforce my request.

I’m hoping I can get the PSA done on Friday, 8 December or Monday, 11 December in time to have the results for my 14 December appointment. That would be close enough to the RO’s mid-December recommendation. (Why does this crap always seem to happen just before the holidays???)

More to come.

Header image: Anza-Borrego Desert, California

Thirteen Years

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence16 Comments

Halloween threw an evil trick at me just ahead of my 13th anniversary of being diagnosed: My PSA nearly doubled, jumping from 0.11 ng/mL to 0.21 ng/mL in just under six months (9 May 2023 – 31 October 2023).

Needless to say, that was not the result I was expecting. I was hoping the salvage radiation and androgen deprivation therapy from the summer of 2022 would have helped put this crap behind me or at least do a better job of controlling it.

What does it mean?

I’m trying hard not to get ahead of myself, but the answer seems pretty obvious: the cancer survived the zapping and is thriving. For me, the fact that it essentially doubled in six months is the biggest concern. If my PSA drifted back up to 0.13 ng/mL, even I would say that I was getting ahead of myself, but it doubling is something else—something more conclusive.

Another factor making me think this is the “real deal” is how rapidly my PSA shot up in the months before the SRT. It went from 0.22 ng/mL on 14 October 2021 to 0.36 ng/mL six months later on 18 April 2022.

From my lay person perspective, this is significant because it means that the window on curative options is closing (closed?) and, going forward, we’ll be more focused on management options that try to slow the inevitable growth of the cancer.

It’s not all doom-and-gloom, though. There are plenty of prostate cancer patients who have been on systemic treatments (hormone therapy) for a decade or longer, keeping their cancer in check. The problem is the side effects of the treatment can substantially impact quality of life, and there’s the chance that the cancer becomes resistant to the hormone therapy, much in the same way that bacteria become resistant to antibiotics.

I have an appointment next week on 9 November with my primary care physician, and with the urologist on 14 December, and it will be interesting to hear each of their perspectives. I emailed the radiation oncologist and get his take, too, while also asking for a refund.

What’s Next?

Again, from my limited knowledge and perspective gained by dealing with this for thirteen years, I suspect the doctors will tell me:

  • To re-test the PSA in one to three months to confirm the upward trend and doubling time.
  • If it continues to increase, perhaps schedule another PSMA PET scan to see if we can locate where it’s at or how far it’s spread, if at all.
  • If we can locate it and it’s a single lesion or two, perhaps another round of radiation may be in order to target those specific lesions.
  • If we can’t locate it, I suspect systemic approaches will be used. This would most likely mean extended hormone therapy. It could possibly mean chemotherapy, but I suspect that would be delayed until later.
  • Or it could be a combination of any or all of the above options.

All of those options come with potentially significant impacts on quality of life.

Final Thoughts

This was a crappy end to an equally crappy month.

On Friday, 13 October (lucky day), I found myself in the Emergency Room with symptoms indicating a cardiac event might be happening. Fortunately, there was no sign of heart attack or stroke. The symptoms puzzled the ER doctor, so he prescribed that I wear a Zio patch continuous heart rhythm monitor for two weeks to see if it catches any irregularities. That comes off on Monday, 6 November and will be sent off for analysis.

The kicker, though, was that I had scheduled an 18-day bucket list trip to New Zealand departing the following Monday, 16 October. I still had some minor symptoms on Saturday morning, so I decided the best and safest course of action was to cancel the trip. (Thankfully, I booked a mostly refundable ticket, and had travel insurance for the remainder.) Disappointing, to say the least.

Perhaps it was meant to be, because an expensive plumbing issue arose at my house that would have needed to have been addressed while I was away.

And now, to put the icing on my October crap cake, my PSA doubles. Ugh.

I won’t lie. When I saw the results online, the news hit hard. I was hoping that it would have continued its downward trend, but I also knew that it could go up, too. I just wasn’t expecting it to go up that much so soon. I would have been happy if the salvage radiation had my PSA hanging out at 0.11 ng/mL for the next decade or so. But I guess that’s not meant to be.

To be transparent, I did question for a moment whether holding off on SRT as long as I did was the wrong decision, but I quickly cast that thought aside. I made that decision with the information I had at the time, and with a desire to avoid treatment side effects for as long as I could. Whether it was right or wrong, no one can say. I’m here now and will have to deal with the present facts. No amount of second-guessing will ever change that, so it’s not worth the effort or energy to do so.

What I’m regretting more at the moment, is cancelling the trip to New Zealand. If a PSA test in December or January shows continued increases in my PSA, I’m guessing that we’d start hormone therapy at the very least. Traveling great distances for a long period while on hormone therapy may not make for the best experience. We’ll see. (Aside from the fatigue and heightened emotions, I seem to have tolerated the Eligard fairly well compared to many.)

Lastly, I’m going to have to do more research on what my options will be and what the current treatment protocols are for someone in my situation.

My summer and early autumn hiatus away from posting on this blog—a refreshing break from cancer—appears to be ending as I start what is likely the next chapter in this story. Stay tuned for more.

Header image: Imperial Beach Pier at sunrise; Imperial Beach, California

Advanced #ProstateCancer Treatments | Eugene Kwon, MD | DIY Combat Manual

On By DanIn Prostate Cancer3 Comments

This is an excellent hour-long video on advanced prostate cancer and its treatment from the Prostate Cancer Research Institute and Dr. Kwon.

You may want to watch this on a computer with a monitor instead of your mobile device, as the print in the slides that are presented is rather small and difficult to view on a small screen.

Prostate Cancer Awareness Month

On By DanIn Prostate Cancer1 Comment

I’ve definitely been derelict in my blogging duties this summer, and that’s okay. My last regular update was in May and it’s now September—otherwise known as Prostate Cancer Awareness Month.

It’s time to help spread the word about prostate cancer to those in your lives that need to hear the message.

As far as my own status is concerned, I’d say that I’m back to my post-surgery, pre-radiation days with no appreciable side effects aside from mildly increased urinary urgency that’s manageable.

My next PSA test will be in November. As a refresher, my post-radiation PSA results were:

  • November 2022 – 0.05 ng/mL
  • March 2023 – 0.13 ng/mL
  • May 2023 – 0.11 ng/mL

Let’s hope the downward trend continues.

The excitement of the summer was about two weeks ago when the remnants of Hurricane Hilary came into San Diego as a tropical storm. It’s the first time since 1939 that a tropical storm landed in San Diego. The last time a hurricane hit the area was 1858. Needless to say, we don’t have a ton of experience preparing for such storms, unlike Florida and the Gulf Coast states.

Luckily, there was minimal damage here in San Diego (none to my home), but substantial mudslides, rockslides, and flash flooding in the mountains and deserts east and north of San Diego.

Header image: Coronado Beach Sunset, Cornado, California

PSA After #ProstateCancer Surgery | #MarkScholzMD #AlexScholz | PCRI

On By DanIn imaging, Prostate Cancer, Radiation Therapy, Recurrence2 Comments

Here’s a great video highlighting the decision-making dilemma that comes with a rising PSA after surgery.

It reinforces that I wasn’t nuts in agonizing over my decision to move forward with the decision for salvage radiation. There are just so many variables that go into the decision, and even the “experts” are really just taking their best guess at it.

Day 4,585 – Doctor Meetings

On By DanIn Prostate Cancer, Radiation Therapy10 Comments

I’ve had conversations with both my radiation oncologist and urologist in the last few weeks, and we all seem to be on the same page.

Both agreed that the bump up in my PSA from 0.05 ng/mL in November to 0.13 ng/mL in March was simply a result of the Eligard wearing off. They also agreed that the downward movement from 0.13 ng/mL to 0.11 ng/mL was a good sign, and that it was still too early to see the full effect of the salvage radiation therapy on its own or to establish a nadir that we can use as a baseline for future monitoring.

We also talked about the side effects that I experienced during and after the radiation, and how they’ve pretty much dissipated over time.

The urologist did explain that if radiation was my primary treatment, that they would wait until my PSA rose to 2.0 ng/mL above my nadir before attempting any further treatment options. But given that I’ve had surgery and salvage radiation, she said that we would be looking at action if my PSA rose to 1.0 ng/mL above my nadir. Something to keep in the back of my mind.

She also said that it’s pretty common for the PSA to fluctuate a bit after salvage radiation, so it may be a tad difficult to establish a trend over time.

Bottom line: Both were pleased with where I was at; both were cautiously optimistic that my PSA would continue to trend downward; and both recommended another PSA test in six months. That means I’ll be back in the urologist’s office on 5 December 2023.

I made a quick trip back to my home state of Illinois over the Memorial Day weekend for our annual gathering with family and friends. It was a great time with perfect weather.

Header Image: Sunset over the Cornfields near Effingham, Illinois.

Month 150 – PSA Results

On By DanIn Prostate Cancer7 Comments

Good news. My PSA is moving in the right direction, with this week’s results at 0.11 ng/mL, down from 0.13 ng/mL in March.

It’s not a significant shift and one data point doesn’t establish a trend, but I’ll take it.

Remember, at the beginning of this, my radiation oncologist said it would be a good twelve to eighteen months at a minimum before we could see the real effects of the radiation on the cancer. The radiation sessions ended eight and a half months ago, so it’s still early.

I’m also guessing that the six-month dose of Eligard has completely worn off by now (or nearly so), as it’s been just over a year since I received it on 3 May 2022.

You can still find my full PSA graph on my home page.

Also on the good news front is that my urinary and bowel functions are pretty much back to where they were pre-radiation. Another win.

I meet with the urologist on 30 May, and I need to get an appointment with the radiation oncologist scheduled to go over the results.

Oh. And on a useless trivia note, this is my 500th post on this blog. (You’ll sleep better tonight knowing that.)

Be well!

Header Image: Eastern Sierra Nevada Mountains near Lone Pine, California (You can check out my impromptu trip to Lone Pine last weekend HERE.)

The Language of Cancer

On By DanIn Prostate Cancer9 Comments

One of my favorite National Public Radio (NPR) programs to listen to is called A Way With Words. It’s a cheeky look at language in all of its glorious variations. It helped explain regional language differences that I encountered when I left my home in suburban Chicago and attended university 300 miles to the west in central Iowa.

In Chicago, we shoveled snow; ate breakfast, lunch, and dinner; and put our groceries in bags. In Iowa, we scooped snow; ate breakfast, dinner, and supper; and put our groceries in sacks. Go figure.

When you introduce “cancer” to your vocabulary, it comes with a host of other technical words, acronyms, and lingo that you have to learn. It also comes with descriptors and well-intentioned words of encouragement that may or may not be quite the right thing to say.

Before I go any further, a quick disclaimer: If you use these words or phrases to your benefit, more power to you. But not everyone reacts the same way, and that’s okay. It would be interesting to hear your perspectives.

“Survivor”

Not long after my surgery and my first few undetectable PSA test results, I described myself as a “cancer survivor.” But a conversation with one of my readers made me rethink its use, as he was quite reluctant to use the term in his own case.

If you look at the definition of the word “survivor,” you come across slight variations of this:

A person who continues to live, especially despite being nearly killed or experiencing great danger or difficulty.

https://www.oxfordlearnersdictionaries.com/us/definition/american_english/survivor

That definition implies that the danger or difficulty is behind you—”I survived the sinking of the Titanic“—but when you’re dealing with cancer, I don’t know that it is ever truly behind you, even if you’re in remission. Interestingly, the National Cancer Institute specifically has its own definition:

One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor

I believe that, if you were to tell someone you just met, “I’m a cancer survivor,” they would conclude that the cancer and its treatment are behind you. It has a sense of finality to it when, in fact, for many of us, the treatments continue. For that reason, I shy away from calling myself a cancer survivor now even though, by the NCI’s definition, I would be a “survivor.” Maybe I’m just weird.

“You Got This”

When you first share your diagnosis with those in your circle, many very well-intentioned folks may offer a peppy, “Oh, man. Don’t worry. You got this!” without knowing what “this” is, or remotely understanding what’s involved with dealing with “this.”

That can be understandable, especially if you’ve never had someone in your life go through a cancer diagnosis and you don’t have the first-hand knowledge of what the experience is like. You think that you’re being supportive, but “You got this!” is often delivered at a time when the patient is scared shitless and doesn’t yet have enough knowledge to know if he really can “get this.”

When I shared that I was about to go through radiation therapy a year ago, “You got this!” was a common supportive response. I know that each was a sincere wish for all to go well, but my initial reaction was one of frustration driven more by my anxiety of what was to come.

I wanted to shout, “Don’t you think I would have ‘got this’ twelve years ago when I had my prostate plucked out?!? No. What I’ve got is recurrent cancer. That’s what I’ve got.” It definitely was my own anxiety talking, but I held my tongue and just thanked everyone for their support knowing that they really did care.

My recommendation to those in a support role to a cancer patient is not to come out of the gate like a cheerleader at a pep rally: “You got this! My uncle beat prostate cancer and you will too.” Each patient is unique and you have zero idea if that will be true. (Of course, there’s the, “My uncle died from prostate cancer,” too, but that’s an entirely different discussion.)

Instead, offer an ear and listen to the cancer patient. Ask broad questions, understanding that all of this is new to the patient and he may not be able to answer. Acknowledge the diagnosis or next treatment phase and ask how you can support them. They may not be able to answer that, either, so offer suggestions—I’ll watch your dog, go to the grocery store, take you to your first appointment, etc.—and just let him know you’ll be there when needed. Having my friend as moral support at my first radiation session was enormously helpful and comforting.

Terms of War

We often hear terms of war used to describe cancer patients: They’re “warriors fighting a battle.” Personally, I’m not a fan of “warrior,” “fighter,” or “battle.” I’m simply a patient experiencing and managing cancer, nothing more.

Not long after former President Jimmy Carter announced that he was entering hospice, this article was released, and it spoke about this very topic.

Why ‘lost their battle’ with serious illness is the wrong thing to say

Using words like “fighter” or “warrior” may lead the patient (and perhaps some family members) to feel that he’s failed if the cancer progresses. There can be a self-imposed and external pressure to “fight harder,” when the reality of the situation may be much different. His mind may simply not have the power to overcome what’s happening inside his body.

Instead, one Johns Hopkins professor suggests using the word “advocate” instead. I like that.

Being an advocate doesn’t mean passivity. It doesn’t mean hopelessness. It does, however, mean that we can gain some power over the cancer and our quality of life. We can say, “Nope. I’m advocating for my own destiny,” and that includes saying how and when we’ll be treated, as well as deciding when enough is enough.

“Journey”

Okay. You’re going to love the irony in this one, reading this on a site called Dan’s Journey through Prostate Cancer.

“Journey” sounds so pleasant, like we’re embarking on a Tanzanian safari, a trip across Europe on the Orient Express, walking along the Great Wall of China, or on one of my North American road trips. Cancer is none of those things.

If I were to start this blog over, I would likely name it Dan’s Prostate Cancer Experience. That would be more reflective of what’s really happening. Oh well.

Summary

This wasn’t meant to discount the words that you use to get through this prostate cancer experience. It was meant as a fun(?) and hopefully thought-provoking look at the language of cancer. Words have meaning, and sometimes those words have different meanings to different people.

What words or phrases have stuck out in your own cancer experience? Those that you embrace, and those that annoy the crap out of you? Please consider sharing them in the comments below.

It’s time for lunch/dinner, so I’ll close for now.

Be well!

Header Image: San Diego Bay and Skyline from Cabrillo National Monument