Tag: Cancer Recurrence

Month 159 – Meeting with Urologist

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Therapy, Recurrence3 Comments

Today’s meeting with the urologist went about as I expected it would. In a nutshell, we agreed to punt for another three months and see where we’re at with a new PSA test at that time.

We talked about the clean PSMA PET scan results and the fact that we remain in this inconclusive gray area right now that doesn’t bode well for making decisions about the next steps. He did suggest that I could start ADT now if I wanted to do so, and he debated about whether it would be appropriate to start ADT with abiraterone. He leaned toward just starting without abiraterone if ADT is what I wanted to do, but I also sensed that he felt no need to rush into this given the negative scan results.

One interesting comment that he made (and I wish I had taken better notes) was along the lines of ADT alone has not been shown to extend life expectancy. The unsaid implication was, “Why go through the side effects of ADT now if studies show there’s no discernable difference in the outcome?” That’s something that I need to dig into a little more.

One interesting thing that’s popped up in my conversations with others in prostate cancer forums or here is testosterone level testing. In all my years of being treated, my testosterone level has never been tested, so we talked about that. It’s something that we can do just prior to starting ADT to establish a baseline reference point.

I mentioned my email conversation with the radiation oncologist, and talked about the possibility of zapping a lesion should it show up on a PSMA PET scan in the future. The urologist seemed a bit indifferent to that approach (probably an occupational hazard).

During the conversation, I mentioned that my PSA doubling time using the last four values was at just over six months, and he commented that that was “not insignificant.”

We did discuss whether there was value in knowing where the cancer was located at this point, or to just know that the cancer is somewhere and proceed with systemic treatment without knowing its location. My concern is that starting ADT would make finding the location next to impossible on a PSMA PET scan if my PSA is knocked down to near zero.

He kept using the term “metastatic” throughout the conversation which, I suppose, is technically correct. If the cancer is someplace other than where it started, it’s metastatic. But I’ve also learned that there is a lot of gray area in the prostate cancer world when it comes to classifying how and what your cancer is.

I also asked for a consult with a medical oncologist to get his/her insights on where I’m at and what should be done next and he was going to put that request in for the consult.

I have a three-month follow-up appointment and PSA test scheduled for 14 May 2024, so the saga continues.

About an hour after I returned home from my appointment, the PCRI posted this very timely video on micro-metastatic prostate cancer.

I’ll probably publish this video as a stand-alone post so it’s easier to find.

Header Image: La Jolla Shoreline, La Jolla, California

Day 4,776 – PSA Results (Not Good)

On By DanIn Prostate Cancer, Radiation Therapy, Recurrence5 Comments

Well, 💩.

The suspense of not knowing what my PSA was up to was killing me, so I went a couple of days earlier than I planned to have my PSA test. I was expecting it to go up a bit, but I wasn’t expecting it to leap a tall building in a single bound.

My PSA jumped from 0.21 ng/mL on 31 October to 0.33 ng/mL on 6 December, a 57% increase in five weeks. Ugh. Using the four PSA values from this year and Memorial Sloan Kettering PSA Doubling Time calculator, my PSADT is 6.7 months.

I’d say it’s safe to conclude that the salvage radiation therapy missed the mark, but I’ll confirm that with an in-person appointment with the urologist on Thursday, 14 December and with the radiation oncologist via email.

I’m writing this late on Thursday night, about 20 minutes after seeing the results online, so I’m still shocked and processing it all. I’ll wrap this post up in the morning…

Back at the keyboard Friday morning after a somewhat fitful night of sleep…

Needless to say, this was (and still is) a bit of a gut-punch for me to see the PSA increase so rapidly. It’s definitely got me concerned and wondering where the cancer is if the radiation didn’t even make a dent in it.

So what’s next? I don’t know. I suspect these would be a few possibilities:

First, maybe let the PSA continue to rise a little more until it’s over 0.5 ng/mL but less than 1.0 ng/mL to give a PSMA PET scan a better chance of picking up where the cancer is located. At 1.0 ng/mL, PSMA PET scans can find the cancer about 90% of the time.

If there are only a couple of localized lesions, we may be able to radiate them.

Second, I’m sure androgen deprivation therapy (ADT) is definitely on the horizon, whether we do a scan and radiation or not. My only question would be the timing of the ADT. If it’s given before a scan, would that make it more difficult for the scan to pick up the lesions? I don’t know.

Last, Dr. Mark Scholz of the Prostate Cancer Research Institute, recently posted a video where he talked about a shift in how they approach treating advanced prostate cancer. (I’ll post the video in a separate post.)

Traditionally, treatments were offered sequentially. You’d start with hormone therapy, and when the cancer became resistant, you shifted to a different type of hormone therapy. When that failed, you would move into chemotherapy, a PARP inhibitor (immunotherapy), injectable radiation, and finally clinical trials.

There is research showing that combination therapies may be more effective in staving off the cancer. Instead of just starting out with ADT, it may make sense to combine ADT with radiation or ADT with chemotherapy right out the gate. Yes, there may be increased immediate side effects from the dual treatment, but early studies are showing higher cure rates and longer survival. Additionally, if the combined treatments are successful, this may lead to a better long-term quality of life because you may be able to be taken off ADT.

My appointment with the urologist is on Thursday, 14 December, and you bet I’ll have a ton of questions ready. One of them will be about getting a full-blown medical oncologist who specializes in prostate cancer involved at this point.

In the meantime, I’m going to have to start learning the language of advanced prostate cancer. There are so many different drugs and treatments with weird names that don’t really indicate what they do or how they’re used that it’s tough to keep them straight. Perhaps a spreadsheet may be in order…

I am trying to look for the silver lining in the cloud. I guess that would be that my PSA is still quite low. But the dark part of the cloud is the fact that I’m probably entering the phase where the treatments and their side effects will eventually be worse than the disease when it comes to daily quality of life. I tolerated the six-month dose of Eligard in 2022 pretty well, but it wasn’t without side effects. I guess I’ll cross that bridge when I get to it.

Oh. And I’m open to any and all insights from those who have traveled this path ahead of me.

Well, time to get out of the house and try to put this out of my mind for a brief period. (Translation: Escapism.)

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.

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.

Month 148 – PSA Results

On By DanIn Prostate Cancer5 Comments

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.

Be well!

Header Image: Sedona, Arizona

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 Session #25 – Update

    On By DanIn Prostate Cancer, Radiation Therapy1 Comment

    This week’s sessions went well for the most part.

    Tuesday, though, was a close call. As I was getting ready to leave the house, my brain was telling me to empty my bladder—soon. I debated whether to follow my brain knowing that I’d likely delay the zapping session because of emptying my bladder ten minutes before or just head off to the appointment hoping that I could hold it.

    Death Ray Machine

    Luckily, the technician came out within a minute of me scanning my barcoded check-in card and asked if I was ready. I told him, in a somewhat panicky voice, that I was more than ready and we had only a few minutes to get this done before the dam burst. We made it happen, and I was trotting out of the room to the nearest toilet, making it there by a matter of seconds before having to let it all out. Too close for comfort.

    Thursday’s session wasn’t as fast, but had me on the brink and pretty much sprinting out of the treatment room to the toilet. Again, too close for comfort.

    This morning’s session (Friday), the pendulum swung in the complete opposite direction. Despite following my normal fill-the-bladder routine, I could tell that I was nowhere near ready to get zapped. They skipped over me and took not one but two patients for their sessions as I waited for my bladder to fill. After the second patient, I hopped on the table, still a little uncertain about my bladder fullness, but the scan showed it was filled sufficiently to go ahead with the treatment (about 70%).

    I met with the radiation oncologist on Monday and we talked about the fatigue and urinary frequency. Once again, he offered Flomax and I declined. However, Monday night and into the entire day Tuesday, I was emptying my bladder every sixty to ninety minutes, day and night. That gets old, fast. After my session on Wednesday, I spoke with the nurse, gave in, and requested the Flomax prescription.

    The Flomax seemed to help that very first night, getting me down to two trips to the toilet. Last night was about as good with only three trips.

    But, as I mentioned a few posts ago, I didn’t have a positive experience with Flomax the first time I tried it years ago, and it seems to be kicking me in the butt again by adding more side effects on top of the ones I’m already experiencing from the Eligard and radiation.

    Of the listed Flomax side effects, I seem to be experiencing drowsiness, headache, body aches, and faster heart rate. Yippee.

    Yesterday, my first full day on Flomax, I was exhausted the entire day (as if the fatigue from the radiation wasn’t bad enough…). I also had a low-grade headache throughout the day and just felt blah. The one that concerned me the most was the heart rate.

    I monitor my blood pressure and pulse each morning and, since March, my resting pulse has been averaging 66 beats per minute. This morning, it was 88 bpm; yesterday, it was 74 bpm. That sudden uptick concerned me, so I spoke with the nurse about it this morning and she reassured me that it wasn’t a real problem, but something to keep an eye on if it keeps increasing.

    I’ll continue with the Flomax for now because they say it can take five or so days for it to really settle into your system. But if these issues continue or intensify, we’ll have a discussion about continuing on Flomax.

    On a more positive note, I did manage to join a friend for lunch on Wednesday and that went fine, with preventative runs to the toilet just before entering the restaurant and just before driving home. By the end of the lunch, though, I was fading fast and was ready for a little siesta at home.

    At this point—compared to how I was doing last winter when my only concern was a rising PSA—I can tell that I’m on the “treatment is worse than the disease” roller coaster. I know that many of these side effects are supposed to subside within a few months after treatment ends, and I’m looking forward to that happening. In the meantime, ten more sessions / two weeks to go!

    On that note, I’ll wish you a happy weekend! Be well.

    Day 4,273 – Fatigue Fatigue?

    On By DanIn Prostate Cancer, Radiation Therapy13 Comments

    Okay. If this keeps up or gets worse, the fun will definitely be over. <sarcasm font>

    Friday’s zapping session went amazingly well. From the time I closed my garage door, drove to the facility, got zapped, drove home, and opened the garage door it was 27 minutes. Total. We’re in the groove.

    The kicker came in the afternoon.

    My energy level just dropped to near zero and I went into a Rip van Winkle-like sleep for the whole afternoon. Not good. Even after the long nap, I was still pretty lethargic in the evening.

    This morning (Saturday) was a different story. I was pretty energetic and worked on organizing my home office up until about noon. But about an hour into it, my energy level hit a brick wall and I was horizontal on the sofa again for a nap that lasted about ninety minutes.

    The nap gave me a second wind of energy, but just a few short hours later around 6:30 p.m., I was dragging anchor again. (I’m powering through it right now as I write this so I’m not up all night because I napped this evening.)

    I’m sure it’s a combination of the hormone therapy (started twelve weeks ago), the radiation, and the fact that I’m running to the toilet two to four times a night that’s causing all this. I’ve even started going to bed about two hours earlier than normal to try and make up for the sleep deficit through the night.

    So, yes, I’m fatigued by the fatigue. I won’t say it’s incapacitating because I have pushed myself through a few low-energy sessions, but it is having an impact on my routine. I can only imagine what it will be like in three to five weeks if it keeps up like this. Sheesh! But, on the positive side: No hot flashes!

    Monday’s session will be the one-third mark for the treatment. I guess that’s something to celebrate.

    Be well!