Day 4,385 – RO Three-month Follow-up

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 4,376 – 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

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

Month 142 – Two Weeks After SRT Ended

After a hectic summer, it’s about time that I get back on my regular posting schedule of at least one post a month on the 11th of each month.

There’s good news and there’s less good news.

The good news: On the fatigue front, that’s been slowly but surely abating and my energy levels are improving steadily. I still have my moments, but it’s much better than it used to be. I expect that my energy levels will be back to pre-radiation therapy levels by the end of next week at the rate they’re going. Also decreasing are the number of trips to the toilet during both the day and night (about 2-3 trips each night). Hopefully, there’s still room for improvement there.

The less good news: The pain in my back, unfortunately, has intensified. Initially, it was a low-grade ache with occasional spikes in pain if I moved in an unexpected way. Now, it’s really become a more constant and prevalent ache, and it takes even less movement to set off a spike in pain. I’m guessing that’s related more to the ADT than anything else, and I’m trying to get some answers from my medical team.

Barring any hiccups, my plan is to get my blood drawn for my first PSA test during ADT and after SRT on Tuesday, 13 September. It’s probably premature (but that’s what the urologist ordered), and I have no idea what to expect. The ADT has had four and a half months to do something to my PSA, but the SRT has had only two weeks. Anyone care to guess?

As a refresher, my PSA was 0.36 ng/ml on 18 April 2022; the ADT was administered on 3 May 2022; and SRT ran 7 July – 26 August 2022. I’ll post the results as soon as I have access to them.

I have my follow-up appointment with the urologist on Tuesday, 20 September, and I just remembered that I need to call the radiation oncologist’s office to get on their schedule for late November or early December.

Be well!

Header Image: Oak Creek near Sedona, Arizona

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 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!

Day 4,037 – Insurance Rationale

Over the weekend, I received a letter from my health insurance company explaining the denial of covering the cost of the PSMA PET scan. This differs from what the representative told me via email (UCLA didn’t send all of the necessary paperwork) and carries far more weight, as it appears that a medical review was done. The redacted section below is the name of my insurance provider.

In a nutshell, because my PSA is 0.22 ng/ml, it doesn’t reach their threshold of 1.0 ng/ml, they deem the scan “not medically necessary” and won’t cover the cost.

The insurance company may have a limited point in their comment, “Use of this study would [not] improve the outcome” with my PSA level being so low. Realistically, the chances of the cancer metastasizing while waiting for the PSA to go from 0.22 to 1.0 are miniscule—especially with my PSA doubling time—and the treatment options would likely be the same: Salvage radiation, perhaps with hormone therapy as well.

However, the insurance company is missing the larger point: The whole purpose of having highly sensitive, highly specific scans like 68-Ga PSMA PET is to locate cancer early so that you can come up with an effective treatment plan that hopefully does, in fact, have a positive impact on the outcome and survival.

My urologists were supportive of getting the scan, so I’ll see if I can’t get them to help convince my insurance company through a formal appeal that this is, in fact, medically necessary.


As far as the scan itself, it’s less than 24 hours away. UCLA Department of Nuclear Medicine did remind me that I have to fast for at least six hours prior to the scan, drinking only water. No juice, no coffee, just water.

I’ll let you know how it went.

Be well!

Eleven Years

It was eleven years ago today that I received my diagnosis and began this little adventure, and I’m glad that, eleven years later, I’m still here to write about it. Of course, the fact that I’d be writing about it eleven years later never even crossed my mind when I started this little ol’ blog back then. Even so, I’m glad that I’ve kept it going.


On Tuesday, I had my appointment with the urologist to review my latest PSA results. In all honesty, it was probably a waste of both of our time and should have been postponed until after the PSMA PET scan.

Because today is Veterans Day, a federal holiday, they didn’t book any appointments in the clinic for today, so that meant that they overbooked appointments on Tuesday. That meant that the doctor was really pressed for time, and I was okay with keeping the meeting short.

The whole conversation went like this:

Dr.: Hi. What’s the status of the PSMA PET scan?

Me: It’s scheduled on 30 November.

Dr.: How are we going to get the results?

Me: I don’t know. I have to figure that out with UCLA. Not to sound rude, but given how new this is, are you going to know what to do with the results?

Dr. Oh, yeah. Not a problem. You can just hand-carry the results if you want. Everything else okay?

Me: Yep. Fine. So if the PSMA scan shows the cancer is still in the prostate bed, and given my PSA doubling time is 45 months, what do you see as the next step?

Dr.: Radiation. (Said without a hint of hesitancy.)

Me: Uh, okay.

And that was basically the conversation, with a few other minor details and questions not worthy of putting in writing. I don’t think she picked up on my reluctance to get zapped or, if she did, it was something that she, as the physician, wanted to overrule.

We agreed to schedule a follow-up in January with another PSA test in advance of the meeting and, hopefully, with the PSMA PET scan results in hand for all. For some reason, they get slammed just before and after the holidays, and the first available appointment was 8 February. I’m generally okay with that, but if the scan and the early January PSA tests reveal something compelling, I’ll try to reschedule sometime earlier.

So that’s about how I expected the appointment to go (even without the rushing).


Oh. I almost forgot. I’m now retired from work! Woo-hoo!

Yes, I took the leap, perhaps a little sooner than I expected, but that’s okay. I added everything up and it was just time.

I’ll be 64 years old in January, and there isn’t a whole lot of longevity in our family. Dad died at 69; his mom died at 69; and mom died at 73. I can’t say that the past is prologue, but you get the picture. As cliché as it is, tomorrow isn’t promised and, after 40+ years in the workforce, I wanted to reserve my tomorrows for me. Selfish, I know. 😄

Given where I’m at in my cancer journey, I also wanted to use as many good tomorrows as I can before radiation, hormone therapy, or the disease itself turns them into bad tomorrows.

Finally, frustration at work exceeded fun and rewards, so that was another good indicator that it was time to start the next chapter of my life.

My last day was 29 October, so I’m still adapting, trying to find a new routine. (It’s challenging going from 100 m.p.h. to zero!) I’m sure I’ll figure it out. I have another trip in the near future, and I’m excited about that.

So that’s it for this post.

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!