Sharing my prostate cancer experience since November 2010
Just a regular guy who turned to blogging to help me share two types of journeys through life: My journey through a prostate cancer diagnosis and treatment, and my travel journeys around the world. I also enjoy sharing things to see and do in my adopted hometown of San Diego.
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
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.
Radical Prostatectomy and post-surgery infection (January 2011)
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.
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.
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:
The two black squares represent when I hit 70 and 80 years of age.
The four orange squares represent my grandparents’ longevity.
The two red squares represent my parents’ longevity.
The two green squares represent my longevity, but need a little further explanation.
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.
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.
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:
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.
Today’s visit with the urologist went about as expected—just a routine review of the salvage radiation therapy, its after-effects, and what’s next.
He was pleased with the drop in my PSA and thought that it may drop even further given how soon after the test was taken after the completion of the radiation. He stressed that we’ll have to establish a nadir in the next year to get a true starting point to determine the effectiveness of the radiation. He was okay with doing another PSA test in November in advance of my radiation oncologist follow-up visit.
Regarding my urinary frequency and urgency, he said I was pretty much where I should be after the radiation, and that it could take up to six months for things to truly calm down. I mentioned that the radiation oncologist put me on tamsulosin / Flowmax, and that it seemed to help a little with my frequency issues.
But I also told him that I stopped taking the tamsulosin over the weekend because my incontinence was up while I was on it and I just wanted to see what it’s like without it. So far, so good.
I did talk about my back and rib pain and once again asked if it could be related to the Eligard. Once again, he thought it was highly unlikely. He also ruled out the possibility that it could be metastases given where my PSA level is at. He did do a bit of a hands-on physical exam to rule out kidney stones (been there, done that, this is not kidney stones). He also made the comment, “Hey, I do plumbing”—I cracked up—and he was glad that I’ll be speaking with my primary care physician about it next week.
He didn’t want to put me on any additional medications for the urinary issues because of side effects that they may have, and we never explicitly spoke about whether to continue the hormone therapy or not. We did, though, talk about this first six-month dose wearing off in the next few months, so it wasn’t as though the topic was completely ignored.
Going forward, I’ll get another PSA test sometime in November; have my follow-up with the radiation oncologist shortly after (yet to be scheduled); and follow-up with urology on 13 December 2022. (I did avoid a 3:30 p.m. appointment like today because traffic sucked driving home.)
Header Image: Cathedral Rock and Oak Creek near Sedona, Arizona
The title of this post may be a tad misleading. My PSA results were okay; my disappointment is with something else.
My PSA came back at 0.05 ng/ml. The lab calls anything <0.03 ng/ml “undetectable.”
I’m not quite sure how to feel about that. It’s back to where it was when if first came detectable seven years ago, but I was kind of hoping the hormone therapy would have knocked it all the way down to undetectable. It’s going to take considerable time for the salvage radiation therapy to do its thing to the PSA.
The urologist scheduled this PSA test back in May when I received my Eligard injection. The radiation oncologist wanted me to have a PSA test just before our follow-up appointment in late November/early December (that appointment date won’t be determined until late October).
For the first time in my ten years of dealing with VA San Diego, I’ve been disappointed with how things are being handled.
Late in the evening on Saturday, 3 September (our three-day Labor Day holiday weekend with no work on Monday), I emailed my primary care physician about the back pain I was experiencing. His assistant acknowledged my email on Wednesday, 7 September, saying he would pass my email to the doctor for action.
I never heard from the doctor last week or Monday of this week, but Tuesday, 13 September, I received an email informing me that a prescription had shipped. That caught me off-guard because I wasn’t expecting anything.
In a nutshell, the doctor had simply gone ahead and prescribed a muscle relaxer and an MRI based on my email alone, without any discussion with me at all. That annoyed me because he wasn’t looking at the larger picture.
The muscle relaxer has common side effects of:
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
increased need to urinate
passing urine more often
unusual tiredness or weakness
The side effects in bold are those that are most concerning to me, because those are exactly the side effects from the radiation and Eligard that I’m trying to reduce, not add to them.
Additionally, I’m already on medication to control my blood pressure, and the Flomax (Tamsulosin) also lowers blood pressure. This muscle relaxer also interacts with both to further lower blood pressure.
Had my doctor and I had a conversation before he issued the prescription, we could have addressed those concerns.
His nurse called me on Tuesday morning and said someone would call me to set up a video conference call with the doctor, and as of today (Thursday), I’m still waiting for the call.
Perhaps the real reason that I’m so frustrated is that I feel as though I’m getting to the point in this disease where the treatments are beginning to impact my quality of life more than the disease itself did prior to the treatments. That sucks, and it’s difficult to reconcile.
Yes, I know it’s very early after the radiation therapy and things will likely improve with more time, and I also know that I’m getting way ahead of myself but, even so, I can’t help but feeling that I am at least one step closer to “the treatment is worse than the disease” phase, and that’s something I’ve wanted to avoid for a long, long time. With luck, these current side effects are temporary, and I’ll have many steps to go before that really kicks in.
Header Image: Clearing storm at Grand Tetons National Park, Wyoming
One of my blog’s readers recently shared with me some information about the Prostate Cancer Promise research project (thanks, C.M.!).
It’s a project that’s seeking to collect DNA samples from patients at any stage of their prostate cancer so that they can identify certain patients with hereditary DNA mutations to track over the course of 15+ years in hopes of being able to help identify more tailored treatment options, as well as being able to let family members know that there is a gene that’s passed from generation to generation that makes them more prone to prostate cancer.
You will be selected for inclusion in the study if you have one of the hereditary mutations they’re looking for.
The research project is being conducted by Johns Hopkins University, the University of Washington, and Color, a company that specializes in DNA testing. The study is open only to U.S. citizens, and you can learn more about it either at their website, prostatecancerpromise.org, or their YouTube channel.
There’s a shorter cursory overview video followed by a more in-depth video below:
Disclaimer: I have no connection with the study, either as a participant or otherwise, and share this only for informational purposes only.
Header image: Grand Prismatic Spring, Yellowstone National Park, Wyoming