Month 145 – Back to Normal

Finally. Things have pretty much returned to my pre-radiation therapy conditions, and I’ll take that as an early Christmas gift. Let’s hope it continues into the New Year.

The fatigue is gone, so I’ve had more energy to get out and do things.

Urinary issues are back to where they were before radiation. I’m much better at making it through the night with typically only one run to the toilet. Some nights I can make it all the way through; and a few nights I may have to make two or three trips, tops. Much better than the four to seven trips during radiation. The frequency during the day has gone way down, as has the urgency (but not as far as I’d like it to go).

My case of IBH (itchy butt hole), has pretty much—but not entirely—disappeared as well. That’s really been a positive development because having bowel issues is one of my biggest concerns with radiation.

Lastly, the pain that I was experiencing in my back and ribs has also gone away. I always attributed it to the hormone therapy, but the doctors didn’t agree. It’s been more than seven months since I received my six month dose of Eligard, so I’ll just leave it at that.

I was supposed to see my urologist on Tuesday, but I came down with a bad head cold or case of the flu (the crud stayed entirely in my head) over the last week. Today (Saturday) is the first day I’m back to about 90% but, on Thursday, I called the urologist’s office anyway to postpone the appointment. I didn’t want to bring any bug into the clinic as an early Christmas gift.

When I spoke with the nurse, we reviewed my PSA and agreed to retest in March 2023, with a follow-up appointment in late March or April. (The scheduling office is supposed to call me to set up the appointment.)

Be well and have a great holiday season!

Header Image: Christmas ornaments for sale at Vienna Christmas market, Vienna, Austria.

Day 4,376 – PSA Okay

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

Month 143 – Much Improved

I don’t know where the time has gone. It’s hard to believe that we’re approaching two months since ending the salvage radiation therapy.

On the whole, things have improved significantly for me since then. My energy level has returned to pre-zapping levels, except when I’m stupid and stay up way too late at night (that’s something I can control). That’s been a good thing because I’ve been able to get out and enjoy the world again.

As far as the urinary control issues are concerned, they’re much improved, too. I opted to stop the Tamsulosin (Flomax) near the end of September, and that seems to have helped. My frequency is greatly improved. During the day, I can go several hours between runs to the toilet, and at night, I’m only have to empty my bladder one to three times a night. That’s a godsend.

The urgency still can be a bit of an issue. There are times where I don’t have much time to get to the toilet if I let things go a little too long. On a related note, since stopping the Tamsulosin, my leakage / incontinence has improved as well, even with the urgency. That’s a positive, too.

I had a video appointment with my primary care physician about the pain I’ve been experiencing in my back. In short, even though things seems to be slowly improving (even after the call with him on 26 September), he still wants me to have an MRI to see what may be going on. That’s scheduled for this Friday.

I’m not exactly sure how the hormone therapy works as you approach the end of the six month dosage period, but I’m guessing its effects may linger another few months beyond the end of the dosage. Again, I’ve been blessed in that my only real side effect has been the mild fatigue—no weight gain and no hot flashes. (Even though all three of my doctors say my back pain is unrelated to the hormone therapy, I’m still not convinced. There’s a first for everything, right???)

The radiation oncologist’s office wouldn’t schedule my three-month follow-up appointment until the end of October when they had a better handle on the doctor’s November schedule. I’ll get my PSA checked again in November in advance of that appointment, and I have a follow-up with the urologist on 13 December.

It’s good to be back into a more normal state after all of that. Let’s hope that there are no long-term radiation side effects that start popping up two to five years down the road.

Header Image: Autumn leaves, Santa Fe, New Mexico

Day 4,332 – Urologist Visit

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 4,327 – PSA Results & Disappointment

    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

    Day 4,178 – PSA Results & Stuff

    I went for my pre-physical appointment blood work yesterday and was surprised to have the results back today. It used to take the VA two or three days to post them online.

    In any case, my PSA climbed once again from 0.33 ng/mL on 11 March to 0.36 ng/mL yesterday, 18 April. PSA doubling time dropped from 14.4 months to 12.7 months, indicating a continued acceleration which makes sense.

    I did schedule my mapping with the radiation oncologist and, in my discussions with the urologist about the PSA test, we agreed to reschedule my 10 May appointment into September after the salvage radiation therapy was completed. My schedule now looks like:

    • 21 April – Appointment with PCP for a lube, oil, and filter change.
    • 3 May – Eligard injection.
    • 16 June – Body mapping with radiation oncologist.
    • 13 September – Urology appointment

    We didn’t set an actual start date for the zapping, but I suspect it would be a week or two after the mapping and it would last through July and into August.


    My emotions in the last week or so have run the gamut.

    I can’t seem to get it out of my head that, once I start down this path, my life as I currently know it will be gone. Much of that is probably unfounded and a gross exaggeration, as the rational part of me knows that the chances for long-term, quality of life-impacting side effects are minimal. Yet the emotional side of my pea-sized brain is dwelling on that and I can’t seem to shake it.

    Of course, that leads me to anger over this insidious disease and the impact it has on your life. Aside from the aches and pains associated with my vintage, high mileage body, it’s difficult to reconcile that within me there’s the army of cells wanting to kill me even though I’m feeling generally well. The fact that you have to take drastic action to fight off those cells—again—makes the situation even more aggravating.

    Part of this, too, stems from the timing. I retired at the end of October, and there are things I want to do and places I want to go. The uncertainty of not knowing how my body will react to the hormone therapy and salvage radiation makes me hesitant to plunk down $10,000+ for a bucket-list trip to New Zealand now that its borders are beginning to slowly open. Maybe by October (New Zealand’s spring), I’ll know whether I can endure a fourteen-hour flight.

    I know that, like the countless men before me, I’ll get past this and adapt accordingly whatever the outcome. What choice do we have? In the interim, I’ll continue to play as my body under treatment allows me to play.

    Venting session over. Thanks for listening, and be well.

    Month 136 – PSA Results & SRT

    Well, kicking the can down the road is no longer an option. My PSA shot up like an Apollo Saturn V rocket (yes, I’m dating myself).

    Between 5 January 2022 and 11 March 2022, it jumped from 0.26 ng/mL to 0.33 ng/mL. That’s a 27% increase.

    Yes, I had the PSA test done about three weeks sooner than I had planned. I had to see the doctor for another issue, and they did full blood work-up for that. They included the PSA test in that battery of tests, too, so I got my results earlier than expected.

    Needless to say, I was hoping that this PSA test would have proved the 0.26 ng/mL to be an outlier, or at least to be consistent, but that wasn’t to be. It’s clear that the rate of increase is accelerating and that’s not good.

    Based on that, I called UCSD Radiation Oncology this morning to schedule an appointment with the radiation oncologist to discuss starting salvage radiation therapy. It was a tough call to make on a Monday morning.

    On a lighter note, the receptionist who took my call was great (answered on the first ring and went straight to her!—no menu tree to button-push your way through). I am not a morning person, and she was far too bright and chipper for a Monday. When I told her that I was ready to schedule radiation, she responded with a cheerful, “That’s great!!” “You said that far too enthusiastically,” I responded with my stomach in knots at having to make the call in the first place. Oh well.

    The enthusiasm continued by scheduling the appointment with the doctor and the body mapping session back-to-back on the same day: Friday, 25 March 2022.

    Oh. She gave me a homework assignment, too: Try to have an empty rectum and a full bladder for the mapping.

    I will admit that part of me wants to press the doctor about having additional imaging done before we start radiation, but I also know that the cancer continues to grow while we’re waiting for the scan and its results. It doesn’t cost anything to ask the question.

    Barring any unforeseen circumstances, the next chapter in this journey is about to begin. Wish me luck.

    Month 135 – Approaching SRT Decision Point

    My visit with the urologist this week went about as expected.

    We talked about my PSMA PET scan results—negative—and he was of the mindset that those would be the expected results at my PSA level. The scan isn’t reliably sensitive enough when the PSA is hovering around 0.2 ng/ml.

    With my steadily increasing PSA, he said that there’s cancer there somewhere. In his view, it’s likely location is still in the prostate bed, but we can’t rule out that there aren’t micro-metastases elsewhere.

    In reviewing the totality of my case, he commented, “This is one of the trickier cases I’ve seen.” I don’t believe he was too offended when I replied, “No shit, Sherlock.” I guess my frustration of dealing with this over the years came out a little too strong.

    What puzzled him about my case is how long after my surgery the PSA returned and how slowly it was increasing over the years. That led to a discussion about PSA doubling time and how my doubling time is shortening at an accelerating rate.

    As part of that discussion, I asked him how many data points should be included in the PSA doubling time calculations, and he typically uses only the last three to get a current snapshot of where it is now. (I re-ran my numbers when I got home, and using the last three PSAs, my doubling time is 19.9 months.)

    Of course, the engineer in me had to play with that a little, so I went through my PSA spreadsheet and calculated the PSA doubling time if I used the last three values after each test. The results were all over the place:

    His recommendation, of course, was salvage radiation to the prostate bed.

    He thought that salvage radiation still had a chance of being curative at this point, and given that I’m 64 years old, he thought that I would have plenty of years ahead of me should I choose to go down that path.

    We talked about long-term side effects. He thought that there was a 20% to 30% chance that my stress incontinence would worsen, as would my sexual function given where it’s currently at now. He wasn’t confident enough to speak about the chances of rectal issues, at least in the numbers that I was seeking. I expressed concern about the incontinence, and he reminded me that they can take care of that with an artificial sphincter. Great. Another surgery.

    I did ask how much longer I could kick this can a little farther down the road, and he didn’t seem to think that that was a good idea at this point. My stomach turned into knots.

    We agreed to set up the consult with the radiation oncologist, as well as retest my PSA in early April.

    Wednesday afternoon, I received a call from the scheduler trying to set up the radiation oncologist referral. She gave me the option of going to Naval Medical Center San Diego—where I used to work and had a previous referral—or going to University of California San Diego (UCSD). As good a medical treatment facility as NMCSD is, I opted for UCSD. If nothing else than for a second perspective, plus I believe UCSD will have more state-of-the-art equipment and a lower turnover rate in medical teams.

    Thursday, morning, UCSD called and we’re set up to meet next Thursday, 17 February 2022. I was a little surprised when they told me that it would be at their Radiation Oncology center that’s about three-quarters of a mile (one kilometer) from my house instead of their main hospital in San Diego.


    As you regular readers already know, I’ve been fearful of getting to this point for a while now. Whether my fears are irrational, unfounded or not, I don’t know, but they’re real for me.

    My fears center more on having very real, quality of life-impacting side effects from the radiation than on whether or not the radiation will be curative. For some inexplicable reason, my gut intuition is that something will go awry and I’ll be in that 1% or 3% or 10%—or whatever it is—group that gets to experience those side effects impacting quality of life. The radiation oncologist is going to have to give a strong sales pitch to convince me the risks are minimal.

    There will be ton of soul-searching and thinking in the days and weeks ahead.

    Stay tuned.

    Month 134 – PSA Results

    Well, happy freakin’ New Year and Happy Birthday! <Sarcasm font>

    My PSA continued its upward climb from 0.22 ng/mL in October to 0.26 ng/mL yesterday.

    Additionally, my PSA Doubling Time fell from 45.3 months to 41.5 months. Still not bad, but that’s including all of my PSA values from December 2017 through present. That may be giving me a false sense of security, so I ran the numbers for just the last two years (February 2020-present), and that PSA Doubling Time is 26.6 months.

    Memorial Sloan Kettering PSA Doubling Time Calculator

    What’s really frustrating is that the 68Ga PSMA-11 PET scan just five weeks ago didn’t see anything. Anywhere.

    I’m definitely going to have to mull this one over. At what point do the actual PSA value and PSA doubling time outweigh the PSMA PET scan results of not seeing anything? Or do the scan results prevail? I don’t know.


    I hope that your 2022 is off to a better start than mine and, yes, I celebrate my 64th trip around the sun this month.

    Be well!

    The Paradox of a Man’s Most-Feared Test, the PSA | The MIT Press Reader

    https://thereader.mitpress.mit.edu/the-paradox-of-mans-most-feared-test-the-psa/

    I found this to be an interesting article about the PSA test and all the controversy that comes with it and its use.

    As someone who has lived with PSA tests in their life for eleven years, I can relate to much of what she’s said in her article. Just read through this blog and you’ll see that PSA anxiety is a very real thing.

    But in those eleven years, I’ve also learned that the PSA test is merely a tool used to give you a data point. It’s just one of many data points that should be used in your decision-making process, either before initial treatment or after. Like any tool, you must be trained on how to use it properly.

    There is no such thing as a “good” cancer. However, I do believe that prostate cancer is far more nuanced than many other cancers. When you hear those three words, “You have cancer,” the near universal response is, “Get it outta me! Now!” But with prostate cancer, that many not be the appropriate response in some cases. That’s where patient education at diagnosis has to become much better. It’s a huge paradigm shift for a cancer patient—and even some medical professionals—to realize that doing nothing (aside from routine monitoring) can be an option in certain cases.

    That’s something that I’ve learned over the years.

    I’ve been blessed to have a type of prostate cancer that has been so slow growing that it’s allowed me to be around for eleven years after diagnosis. Would I do anything differently? I may have postponed my surgery a little longer to watch what my PSA was doing over a longer period to establish a trend. However, given that the doctors felt a tumor during the digital rectal exams, that told me that I was dealing with something more than a few random cancer cells. There was a mass, and it needed to come out.

    Obviously, I’ve made the choice to monitor as my PSA has slowly increased over the last six years since becoming detectable again, even though some were quick to recommend salvage radiation therapy. With luck the PSMA PET scan on 30 November will reveal whether that was the dumbest decision of my life or whether I may be able to continue on my current plan of doing nothing but monitoring or whether it’s time for salvage radiation.

    Lastly, a few other things that I’ve learned in the last eleven years is that every patient’s case is unique and that even the medical professionals can’t always agree on the best course of action. You just have to do your own research and go with the best information you have available to you at the time. It’s your body, your life, your choice.

    Be well!