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.
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.
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
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.
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.
I went for my next PSA test this week and I truly didn’t know what to expect going into it. My PSA jumped from 0.05 ng/mL on 1 November 2022 to 0.13 ng/mL on 7 March 2023. I’m concerned but not freaked out.
My best guess is that the androgen deprivation therapy effects are wearing off faster than the salvage radiation effects are kicking in. (At least that’s my hope, but what do I know?)
It’s been ten months since I received the six-month dose of Eligard on 3 May 2022, so it makes sense that it would be less impactful on my PSA over time and that my PSA would creep up again. I’m a bit surprised by how big of a jump it was, though.
Of course, I’ll talk to both the urologist and radiation oncologist about this, but that won’t be until May as things stand right now. (I did email the results to the radiation oncologist, and he replied, “I would not read too much into a single PSA value”).
Our follow-up testing and appointment scheduling between the VA urologist and the UCSD radiation oncologist is getting a bit out of whack, and I need to try to rein that in. It’s difficult to do the four-month follow-ups suggested by the doctor when appointment availability is six to eight months out. (I’ll spare you the details.)
My appointment with the VA is on 30 May, and I don’t have a firm date for the UCSD six month follow-up yet, but that should be in May as well.
In other news, my bowels seem to be calming down, with me returning to bowel movements once or twice a day. The intestinal gas still happens, but that comes and goes, too. Urinary frequency is pretty much back to where it was before the radiation, and I can usually make it through the night now with zero to one trips to the toilet.
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.
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
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
The title of this post may be a tad misleading. My PSA results were okay; my disappointment is with something else.
PSA Results
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).
Disappointment
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:
Confusion
constipation
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
headache
increased need to urinate
nausea
passing urine more often
sweating
trouble sleeping
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.
Be well.
Header Image: Clearing storm at Grand Tetons National Park, Wyoming
Dan's Journey through Prostate Cancer 