The Prostate Cancer Foundation is hosting a Zoom webinar at 4:30 p.m., Pacific Standard Time (Los Angeles) on Tuesday, 17 January 2023 to talk about rising PSA after treatment. The webinar is free and open to all, but you must register in advance.
You can send questions in advance to: webinar@pcf.org.
If you can’t attend, the webinar will be recorded so you can view it on their website later.
https://www.pcf.org/pcf-webinar-series/
Header Image: Anza-Borrego Desert, California
Finally. Things have pretty much returned to my pre-radiation therapy conditions, and I’ll take that as an early Christmas gift. Let’s hope it continues into the New Year.
The fatigue is gone, so I’ve had more energy to get out and do things.
Urinary issues are back to where they were before radiation. I’m much better at making it through the night with typically only one run to the toilet. Some nights I can make it all the way through; and a few nights I may have to make two or three trips, tops. Much better than the four to seven trips during radiation. The frequency during the day has gone way down, as has the urgency (but not as far as I’d like it to go).
My case of IBH (itchy butt hole), has pretty much—but not entirely—disappeared as well. That’s really been a positive development because having bowel issues is one of my biggest concerns with radiation.
Lastly, the pain that I was experiencing in my back and ribs has also gone away. I always attributed it to the hormone therapy, but the doctors didn’t agree. It’s been more than seven months since I received my six month dose of Eligard, so I’ll just leave it at that.
I was supposed to see my urologist on Tuesday, but I came down with a bad head cold or case of the flu (the crud stayed entirely in my head) over the last week. Today (Saturday) is the first day I’m back to about 90% but, on Thursday, I called the urologist’s office anyway to postpone the appointment. I didn’t want to bring any bug into the clinic as an early Christmas gift.
When I spoke with the nurse, we reviewed my PSA and agreed to retest in March 2023, with a follow-up appointment in late March or April. (The scheduling office is supposed to call me to set up the appointment.)
Be well and have a great holiday season!
Header Image: Christmas ornaments for sale at Vienna Christmas market, Vienna, Austria.
This is an informative video that would benefit the newly diagnosed prostate cancer patient.
It talks about some of the more recent advances in radiation therapies that really should be considered when making a treatment decision.
On this Thanksgiving Eve in the U.S., I just wanted to thank everyone who supported me through the last year of scans, tests, hormone therapy, and radiation therapy. Even though I’ve been dealing with this for twelve years, many of these were new and scary experiences for me. You helped me through them.
It’s funny in situation like these who steps forward to provide an ear to listen, some sage advice, and a shoulder to lean on. I’ve never met most of you in person, but you’ve supported me through your comments and emails, and I truly appreciate that.
I hope you have a great Thanksgiving—or Thursday, if you’re not in the U.S.—with your own support networks, whether they be family, friends, or fellow prostate cancer patients.
Header Image: Yosemite Valley, Yosemite National Park, California
Cancer isn’t cheap.
I received the last of my Explanation of Benefits statements covering my salvage radiation therapy (SRT) with concurrent androgen deprivation therapy (ADT). You know me. For grins and giggles, I had to play with the numbers.
Ouch!
| Therapy | Billed |
| Radical Prostatectomy and post-surgery infection (January 2011) | $109,989 |
| Salvage Radiation Therapy (incl. 6-month Eligard dose) (May-August 2022) | $176,548 |
| Total | $286,737 |
Those numbers do not include all of the doctor visits and PSA tests from diagnosis to today—just the surgery and SRT/ADT.
For the radical prostatectomy and the subsequent infection hospitalization, that’s what the hospital and doctors billed my employer-provided health insurance company. Of course, the insurance company didn’t pay the hospital the full amount, and I had some copay responsibilities to the tune of $4,372 as well.
For the SRT/ADT, the “Billed” number is what USCD has billed the VA for my treatment. Each zapping session was billed at $3,894. (My radiation oncologist had no idea it was that expensive. As a university employee, he’s not involved in billing.) It appears that the VA is reimbursing UCSD at a rate of somewhere between 10% and 15% of the billed costs.
Coincidentally, I came across this article about the costs of ADT: It cost $38,398 for a single shot of a very old cancer drug. My Eligard shot was billed at $10,835. What a deal! <sarcasm font>
Of course, the emotional cost of cancer is incalculable.
Moral of the story: Don’t get sick without health insurance.
Header Image: Sunset over the Pacific Ocean, Silver Strand State Beach, Coronado, California
My somewhat premature three-month follow-up was last Thursday, 10 November, and went about as expected. On the whole, he was pleased with where I’m at.
I reviewed several things with him.
First, we talked about my PSA being 0.05 ng/mL both in September and again in November. He was pleased with the number and didn’t think there was any significance in the fact that the two numbers taken about six weeks apart were the same. He chalked the reading up to the hormone therapy and said that at this early stage, my PSA was “meaningless” in determining the effectiveness of the radiation. We’ll have to see what it is a year or two down the road to determine that. No big surprise there.
He did say that I shouldn’t panic if the PSA number starts to go up, as long as it isn’t a huge leap or is increasing rapidly. He expected it may go up a bit and then stabilize and stay at a certain level as the hormone therapy wears off. Time will tell if he’s right.
I mentioned that my urinary frequency was back to pre-zapping levels, with far fewer trips to the toilet in the middle of the night (0-3). The urgency was slightly elevated from my pre-zapping days, but is tolerable as long as I act on it.
The one concern that I really wanted to talk about—and is the one I feared the most about radiation—were bowel issues.
The week before I went on my mini-vacation to Kings Canyon National Park, something was afoot in my bowels. I was having three to five bowel movements a day for about four days when I normally get by with one. I was thinking, “Oh, crap! Is this from the radiation??” I was concerned enough that I almost canceled my trip, but when things calmed down the weekend before, I decided to go ahead.
In the last two weeks or so, I’ve been suffering from what I call IBH—Itchy Butt Hole. (The nurse doing the prescreen interview cracked up when I told her that.) I also seem to be gassier than usual, and my diet hasn’t changed to cause an increase in gas production.
The doctor was a bit puzzled by this development, suggesting that the radiation may have irritated hemorrhoids and that a topical cream may help resolve the IBH. He was stumped by the increased gas and suggested that, if it persists, I talk to a GI doctor. He did say, however, if radiation had damaged my bowels, it would be more substantial than what I’m experiencing, so that was good to hear. Even though, I’m going to track this closely to see if things continue to worsen.
In the end, the radiation oncologist was quite pleased with where I’m at. We’ll follow-up in six months.
I have an appointment with the urologist on 13 December 2022, so we’ll see what he has to say and map out a PSA testing schedule.
Be well!
Header image: Premature Desert Blooms, Anza-Borrego State Park, near Borrego Springs, California
Woo-hoo! I’m still alive and kicking twelve years after diagnosis with this annoyingly insidious disease. I’ll take that as a definite win.
But regular readers already know that, in the last year, the path has gotten a little bumpier with the treatments needed to keep me around another twelve years (or more, hopefully). I guess that’s all part of the package deal. It doesn’t mean we have to like it, but it’s part of the cancer experience.
Also part of the cancer experience is thinking about one’s own mortality. It’s not something to dwell on, but it is something that I’m certain most cancer patients consider at some point.
Several years ago, I stumbled across Tim Urban’s TEDx Talk about procrastination (video below). It was a fun, engaging talk and, at the end, he introduced the concept of a “life hourglass.” In his example, he showed a table of empty boxes with each box representing one week of a ninety year life. Of course, the nerd in me had to take that one step further.
At the end of her life, my mom had a really healthy outlook on death and dying, to the point it surprised her hospice nurses. She made it okay to talk about what most would view as a rather morbid or taboo topic, and I guess I’m following in her suit. This exercise is really meant to be a more lighthearted approach to get us to think about the time we have remaining and how we best want to use it. Priorities.
Our family doesn’t have a history of longevity, so my getting to 90 years is against the odds even without cancer in the mix. The analyst in me wanted to get a more realistic understanding of my possible longevity, so I added in how long my parents and grandparents lived. In my hourglass below:
My father outlived his mother by exactly 50 days, both dying of cardiac issues at about 69.5 and 69.7 years of age. If I follow in their footsteps, the first / upper green square represents me making it to 69.6 years—the average between them. The second / lower green square represents my longevity based on the average of all six of them, or 72.5 years (more specifically, 19 July 2030).
Am I obsessed with death? No, I’m probably more obsessed with spreadsheets and analysis. (Perhaps I should have been an actuary 😂).
For me, this exercise has had value. Sure, all of us of a certain “mature” age recognize that more of our life is behind us in the rear-view mirror than is ahead of us through the windshield, and putting it into a visual format like this really makes you sit up and take notice. It makes you ask, “What am I going to do with those remaining boxes?”
Of course, side effects from treatments for advancing disease or other maladies associated with growing older can impact us, too. Those may begin to take away quality of life, filling some of those boxes from the bottom up, putting us in a vise being squeezed between time and future abilities. While they may not do us in, they can definitely hinder our ability to live a full life.
Of course, none of us have a crystal ball and know when any of this will happen. It could be tomorrow, or it could be thirty years from now, so that leaves today. (Yes, I know that’s as cliché as hell, but it’s true.)
So, if you’ll excuse me, I’m going to close my hourglass spreadsheet and open a few spreadsheets to plan some bucket list trips. Time’s a-wasting…
Be well and remember it’s Veterans Day today (hence the photo above).
Header Image: USS Cochrane DDG 21, My first ship in the U.S. Navy.
I met with the radiation oncologist Thursday morning, but I’ll put those details in another post over the weekend.
I went for another PSA test this week in advance of my (almost) three-month follow-up appointment with my radiation oncologist next week.
My PSA came in at 0.05 ng/ml. That’s the same that it was in September shortly after finishing the radiation on 26 August 2022.
The fact that it didn’t go up is good. The fact that it didn’t go down is, well, I don’t know. I do know that I would have liked to seen it go down. I also know that, with radiation, your PSA may never get back to undetectable and you have a nadir value that becomes your baseline for future PSA tests.
Two data points don’t necessarily make a trend, so I suspect it will take a few more PSA tests to do so.
It will also be interesting to see what happens as the Eligard begins to wear off. It was six months ago today that I was given the six-month dose.
My appointment with the radiation oncologist is on 10 November and my appointment with the urologist is on 13 December. It will be interesting to get their perspectives.
Be well!
Header Image: San Juan Mountains near Trout Lake, Colorado
About two weeks after I completed my salvage radiation therapy, the concessionaire that runs lodging in some of our national parks was having a flash sale, and I was eager to book something to pamper myself after the summer of radiation. I was still beat up from the therapy, but I went ahead and booked the room anyway, thinking that it’s easier to cancel the reservation if I wasn’t feeling up to it than to make one later on.
I came close to cancelling the reservation, but didn’t.
Immediately after my last blog post on 11 October, my side effects took an unexpected turn when my bowels started acting up.
Normally, I’m a pretty regular guy with one bowel movement a day, usually in the morning. But for those four or five days before my trip, I was having three to five movements a day in conjunction with an irritated anus (itchy and burning sensations). Fortunately, things calmed down just before the trip and I went anyway.
Loss of bowel control has been one of my biggest fears with doing the radiation so, needless to say, this was quite alarming for me. I never actually lost control during any of these episodes—it was just increased frequency which was workable but annoying. It’s definitely something I’ll discuss with the radiation oncologist when we meet on 10 November.
Going into the trip, I knew that I wasn’t in the same physical condition as I was before the treatment, but I was a bit surprised by how much had changed.
I hiked the Zumwalt Meadow trail in May 2021 and did just fine. It’s a relatively flat trail at about 5,000 feet / 1,500 meters elevation with a somewhat tricky part through a rock fall area. I hiked the trail again on this trip, but found it was much slower going for me. As I got to the rock fall area, I could feel the burn in my legs as I was climbing up and down the rock steps placed on the trail. I guess that’s the hormone therapy kicking in, weakening my leg muscles.
Each day in the park, I found myself heading back to the room in the lodge for an afternoon siesta. Perhaps it was the altitude, the cool morning autumn air, and the hiking that did me in (or a combination of all), but I found that my stamina was diminished and needed the little nap.
Of course, that whole experience affected me mentally and emotionally as well. Initially, I was frustrated that I couldn’t do some of the simple things that I did before—or at least couldn’t do them as easily as I had done them before. But those feelings didn’t last too long, thankfully.
By the end of the trip, I turned more to acceptance than frustration.
I accepted the fact that, for this trip, my body had been beaten up pretty badly and I really did nothing to prepare for it between the time the side effects were subsiding and the start of the trip. After meeting a gregarious couple who were in their 80s navigating the rock fall area very cautiously, I reminded myself that what matters most is that I’m out here doing this—just as they were—and it mattered less how fast or agile I was. We just have to adapt to our new limitations.
Even so, it can be difficult to accept the fact that my body may no longer be able to cash the checks my mind is wanting to write.
But I also recognize that I need to take ownership in restoring or preserving my fitness level by doing more physical activity. There are things I would like to see and do yet, and if this is my new “best,” then some of those may now be in question, and that would be disappointing to say the least.
In the end, it was good that I went and learned what I did. It helps frame my mind for what I need to do going forward, and what may or may not be possible for future trips.
Be well!
My original plan was for three nights in Kings Canyon and then return home, but at the last minute, I decided to add another day and drove through Yosemite National Park and over Tioga Pass to see the autumn colors in the Eastern Sierra Nevada mountains near Bishop, California. You can check out my posts on my other blog here:
Kings Canyon and Cedar Grove Lodge
Enjoy!
Header Image: Kings River, Kings Canyon National Park, California
I don’t know where the time has gone. It’s hard to believe that we’re approaching two months since ending the salvage radiation therapy.
On the whole, things have improved significantly for me since then. My energy level has returned to pre-zapping levels, except when I’m stupid and stay up way too late at night (that’s something I can control). That’s been a good thing because I’ve been able to get out and enjoy the world again.
As far as the urinary control issues are concerned, they’re much improved, too. I opted to stop the Tamsulosin (Flomax) near the end of September, and that seems to have helped. My frequency is greatly improved. During the day, I can go several hours between runs to the toilet, and at night, I’m only have to empty my bladder one to three times a night. That’s a godsend.
The urgency still can be a bit of an issue. There are times where I don’t have much time to get to the toilet if I let things go a little too long. On a related note, since stopping the Tamsulosin, my leakage / incontinence has improved as well, even with the urgency. That’s a positive, too.
I had a video appointment with my primary care physician about the pain I’ve been experiencing in my back. In short, even though things seems to be slowly improving (even after the call with him on 26 September), he still wants me to have an MRI to see what may be going on. That’s scheduled for this Friday.
I’m not exactly sure how the hormone therapy works as you approach the end of the six month dosage period, but I’m guessing its effects may linger another few months beyond the end of the dosage. Again, I’ve been blessed in that my only real side effect has been the mild fatigue—no weight gain and no hot flashes. (Even though all three of my doctors say my back pain is unrelated to the hormone therapy, I’m still not convinced. There’s a first for everything, right???)
The radiation oncologist’s office wouldn’t schedule my three-month follow-up appointment until the end of October when they had a better handle on the doctor’s November schedule. I’ll get my PSA checked again in November in advance of that appointment, and I have a follow-up with the urologist on 13 December.
It’s good to be back into a more normal state after all of that. Let’s hope that there are no long-term radiation side effects that start popping up two to five years down the road.
Header Image: Autumn leaves, Santa Fe, New Mexico
Dan's Journey through Prostate Cancer 