Category: Radiation Therapy

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

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 149 – Slow Flow?

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects1 Comment

I may be stepping into new post-radiation territory for me—emphasis on may. That, or it could all be in my head.

Over the two or so weeks, I’ve noticed that when I go to empty my bladder, there are times where my urine flow seems to be a tiny bit slower and weaker that it was not too long ago. The engineer in me really wants a quantitative way to measure it to confirm whether or not my mind is playing tricks on me, but that isn’t going to happen.

Fortunately, there is no pain when urinating or blood in the urine, nor are there any issues with intermittent flow.

I’m hoping that this isn’t an early sign of radiation-induced strictures that are starting to form that have to be dealt with at some point in the future.

On the plus side of things, my frequency of needing to run to the bathroom is down considerably, especially at night. I can make it through most nights without having to run to the toilet more than once, if at all. But that means that my bladder is full in the morning, and the flow coming out on that initial morning pee isn’t as “fast and furious” as it was a few weeks ago.

I’m still waiting to hear from the radiation oncologist’s office concerning my six-month follow-up appointment which, should happen in May. I do have an appointment with the VA urologist on 30 May, and I may try to get another PSA test done before then.

Other than that, not much else to report this month. Be well!

Header Image: Spring in the Neighborhood

Watch “A Medical Oncologist Compares Surgery and Radiation for Prostate Cancer| Mark Scholz, MD | PCRI” on YouTube

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects, Surgery9 Comments

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.

Day 4,385 – RO Three-month Follow-up

On By DanIn Prostate Cancer, Radiation Therapy2 Comments

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

Day 4,332 – Urologist Visit

On By DanIn Prostate Cancer, Radiation Therapy, Side Effects1 Comment

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.)

Be well.

Header Image: Cathedral Rock and Oak Creek near Sedona, Arizona

    Day 4,315 – A Week After SRT Ended

    On By DanIn Incontinence, Prostate Cancer, Radiation Therapy, Side Effects4 Comments

    If you recall my last update, I was all abuzz with energy on my first day after salvage radiation therapy ended. Well, that didn’t last long.

    Sunday and Monday I was pretty much knocked out with fatigue, and Tuesday wasn’t much better. The rest of the week saw slight improvements with each passing day, but you would have still found me taking a cat nap here or there.

    The urinary frequency is still there, meaning I’m still running to the toilet four to six times a night which is annoying. But there has been another change, and I’m not sure if it’s a result of the radiation, the Flomax (Tamsulosin), or a combination of both.

    Post-surgery, pre-radiation, I would get the urge to empty my bladder and I’d have time to make it to the toilet and then consciously start the flow to empty my bladder. Since the radiation, the time between my brain receiving the urge to empty my bladder and the time I need to be at the toilet is much shorter. It also seems that my ability to control the start of the flow is lessened to a degree, meaning it starts flowing on its own. That’s led to one minor accident where I was just a few seconds shy of getting to the toilet.

    I’m not overly concerned about this at the moment, as it’s still early after the radiation ended. Plus, it may be the Flomax that’s contributing to this as well, and the radiation oncologist said it would be acceptable to stop taking it around the end of September if I felt it wasn’t helping me with the urinary frequency. However, if it continues beyond that, I may have to get one of those “Where’s the toilet?” apps for my phone. 🙂

    This morning, I was surprised by blood on the toilet paper after my morning constitutional. I’m pretty sure it’s from irritated hemorrhoids rather than from something deeper inside. It’s something to keep an eye on going forward.

    You may recall that, back in June about five weeks after I received my Eligard injection, I was noticing a dull musculoskeletal ache in the middle of my back. Through the summer, that stayed pretty consistent—just a minor ache in the background not causing any issues. It was tolerable and I didn’t think much of it. In the last few weeks, that’s changed.

    The ache is more intense and a bit more widespread across my back than when it first appeared. Plus, I can have brief shots of acute pain if I move suddenly or twist my body in a weird way (like after unexpectedly bumping into something). It’s more like a muscle spasm response than anything else. But it can and does impact how the way I walk (a little more gingerly) and how I stand up.

    Of course, hormone therapy is known to contribute to musculoskeletal issues, and one of the listed side effects of Flomax is “body aches.” Perhaps they’re additive.

    Of course, my mind also has to go down the path of possible distant metastases to the spine or ribs even though it’s extraordinarily unlikely given where my PSA was at going into SRT (0.36 ng/ml). Still, it’s a conversation that I’m going to have with my urologist in my meeting on 20 September.

    Stay tuned for more to come.

    Be well!

    Image: Salton Sea, California

    Zapping is Done!

    On By DanIn Prostate Cancer, Radiation Therapy18 Comments

    The final zapping session is history. Hallelujah!

    It’s important to me to recognize the staff of the UCSD Health Radiation Oncology – Chula Vista clinic. They turned what was initially a scary experience (for me) into something that was much more pleasant and positive. They radiation therapists were great coaches, provided compassionate care, and endured my stupid puns and jokes. The nurses were equally compassionate, thoroughly answered all of my questions, and helped assuage my fears in the process. To all of them: Thank you!

    I went out for a celebratory brunch with my friend who was there for the first session and listened to me whine throughout the process.

    Now it’s time to let my body recover from seven weeks of being stuck in a giant microwave oven. Hopefully, it recovers quickly and I get back to a more normal routine. Of course, we may not know for another year whether it was truly effective. Fingers crossed.

    The effects from the hormone therapy will cloud the results of the radiation for quite a while. The six month dose will last into October (and beyond) and, if my PSA has, in fact, dropped, we won’t know whether it’s the ADT or the radiation (or both) that caused it. Realistically, we probably won’t know whether the radiation was successful until late next spring or even summer.

    Enjoy your weekend! I know I will.

    Zapping: The Final Week

    On By DanIn Prostate Cancer, Radiation Therapy2 Comments

    Last weekend, I ran out to Cabrillo National Monument where I used to volunteer, just to hang out and chat with some of the volunteers there. It was a great visit and I felt quite energized while I was there. But then I discovered something.

    There definitely is benefit in forcing yourself to get out and enjoy a lunch with a friend, a walk along the beach, or just a drive through the country. It is energizing while I’m doing it. But what I’ve noticed is that the fatigue kicks in much harder and much faster than if I’m just hanging out at home.

    I could tell near the end of my conversation with my fellow volunteer that the fatigue was coming on fast, and that it was time to go home. When I got home, I was out for the count for a couple of hours after. Not fun.

    Monday’s zapping session was dicey. I started drinking my liter of water at 8:30 a.m. and finished it at 9:05 a.m., well in advance of my 9:45 a.m. appointment. As I was leaving the house at 9:30 a.m., I felt pretty good about my bladder fullness, but once I got to the clinic, that feeling of fullness subsided substantially. I told the technician that I though I was borderline and we agreed to take another patient ahead of me. “It will take about ten minutes.” Famous last words.

    Long story, short, it was nearly half an hour later when they put me on the table, and by this point I was ready to burst. They even put an absorbent pad on the table and a plastic urinal bottle on the counter “just in case.” Fortunately, neither were needed, the session was completed successfully, and there was no accident.

    Word of advice to those managing their bladder fullness timing: Allow a cushion for delays.

    When I got home, I was totally spent and spent the entire day in various stages of rest. Ditto for Tuesday. (Hence my Wile E. Coyote post!) Wednesday went as planned, although I was at about 60%-70% bladder fullness.

    Thursday’s session went a bit awry. It actually started around 2 a.m. Thursday when I made one of my five runs to the toilet. After crawling back into bed, I just could not fall asleep again. Too many things running through my pea-sized brain kept me awake. I finally dozed off around 4:30 a.m. Ugh.

    When I got up, I wanted to avoid a repeat of Wednesday, so I started drinking water as soon as I got out of bed around 7 a.m., and I started drinking my liter of water a full thirty minutes earlier than I normally start. When I got to the facility, I could tell I wasn’t ready, so we skipped me and brought another patient in. Fortunately, that was only about a fifteen minute delay which filled my bladder nicely.

    I met with the radiation oncologist after the session Thursday, and we talked about the fatigue and urinary frequency. He said that the fatigue will likely last for about two more weeks after the end of the treatment and then I should see a noticeable improvement. He recommended that I stay on the Flowmax through the end of September to help with the frequency. We’ll schedule a follow-up session for three months from the end of treatment, so I’m guessing late November or early December.

    Barring any technical issues, tomorrow morning’s session will be my last. Woo-hoo! I’ll post about that separately.

    Be well!