Category: Side Effects

Day 5,774 – PSA Results & Thoughts on ADT + ARPI

On By DanIn Hormone Therapy, Prostate Cancer, Side Effects2 Comments

I overachieved on this post. Normally, reporting PSA results would be quite simple and short. Not this time. The act of writing helps me organize my research and rationalize treatment decisions. Thanks for your indulgence!

I went for my PSA test this morning, 1 September, and it was 3.32 ng/mL, up from 2.65 ng/mL back in May.

I expected my PSA to go up, and I guessed it would be around 3.0 ng/mL, so the amount it went up was a bit of a surprise. It’s closing in on my PSA level at initial diagnosis, 5.0 ng/mL.

PSA Doubling Time

Seeing as both the VA and UCSD medical oncologists (MO) stressed the importance of using PSA doubling time (PSADT) to guide treatment decisions during my meetings with them in June, I really wanted to try to nail down how it should be calculated.

The Memorial Sloan-Kettering PSADT Calculator is a great tool that I’ve been using, but it doesn’t provide any guidance on how many data points should be used over what period of time. I finally found some definitive guidance:

PSA values need not be consecutively rising and all values obtained over a maximum period of 12 months should be included in the calculation. The maximum period of the past 12 months is recommended to reflect the patient’s current disease activity, since in some men PSADT may change over time. Minimum requirements for the calculation are 3 PSA values obtained over 3 months with a minimum of 4 weeks between measurements.1

Based on those guidelines, my PSADT is:

Number of PSA Values UsedGoing back over X monthsPSA Doubling Time (Months)
36
(3 March 2026)		14.8
49
(1 December 2025)		9.0
512
(2 September 2025)		8.8
Source: MSKCC PSA Doubling Time Calculator

You can see that I’m sitting right around that nine-month PSADT point that’s the suggested trigger for action. I’m going to keep my mouth shut and ask my MO to calculate the PSADT and see what number they come up with.

Obviously, I’m concerned, but not panicked by this jump in my PSA. I’ll email the MO to see if we should stick to the current plan of having a CT scan on 23 November, or move it to an earlier date. Or to have another PSMA PET scan. In my mind, I’d like to have at least one more scan to try and see if we can determine what we’re dealing with before leaping into combination hormone therapy.

Combination Therapy

The MO’s were really encouraging action if my PSADT was nine months or less because, with faster doubling times, there is high risk of metastasis and prostate cancer-specific mortality. The action that they’re recommending is intermittent combination therapy using androgen deprivation therapy (ADT) plus an androgen receptor pathway inhibitor (ARPI). The specific drugs they’re recommending are Eligard® (leuprolide acetate) (ADT) and Xtandi® (enzalutamide) (ARPI). The Eligard® would stop the production of testosterone, and the Xtandi® would block the cancer cells from absorbing testosterone.

The reason that the MOs want to use the combination therapy is because of the results that were shown in the EMBARK trial. Using Eligard® and Xtandi® together had 87.3% of patients in the trial reach the five-year point metastasis-free. Using just Eligard® alone—the old standard of care—just 71.4% of patients were metastasis-free at five years. The combination therapy won’t prevent progression to metastasis; it just slows it down. This short (2 min.) video from the New England Journal of Medicine gives a good overview:

The combination therapy would be given intermittently, with nine months on the medication and, if my PSA drops to a certain level (usually below 0.2 ng/mL) and stays there, there wouldn’t be a need to restart the combination therapy until there’s a rise in my PSA.

The one thing that I couldn’t find or confirm in my research was if there was a specific PSA level where, if you exceed it, this combination therapy should be started. The UCSD MO seemed okay with waiting until it was as high as 5 to 10 ng/mL if the PSADT didn’t indicate high risk.

Xtandi® (enzalutamide) is just one of several drugs known as Androgen Receptor Pathway Inhibitors (ARPIs). Two others that are commonly used include ERLEADA® (apalutamide) and NUBEQA® (darolutamide). Each has its own similar, but slightly different side effects.

Side Effects / Adverse Events

Messing around with your hormones can have substantial and sometimes debilitating side effects and, when using combination therapy, they can be additive. The National Cancer Institute has defined five grades of adverse events based on their severity:

GradeImpact
Grade 1Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only; intervention not indicated.
Grade 2Moderate; minimal, local or noninvasive intervention indicated; limiting instrumental ADL or mild/moderate impact on age appropriate normal daily activity (pediatric)*.
Grade 3Severe or medically significant but not immediately life threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self-care ADL or severe impact on age appropriate normal daily activity (pediatric)**
Grade 4Life-threatening consequences; urgent intervention indicated.
Grade 5Death related to AE.
Notes:Activities of Daily Living (ADL):
*Instrumental ADL refers to preparing meals, shopping for groceries or
clothes, using the telephone, managing money, etc.
**Self-care ADL refers to bathing, dressing and undressing, feeding self,
using the toilet, taking medications.
Source: CTCAE and Adverse Event Reporting

Clearly, a patient would want to steer clear of any Grade 3 or 4 side effects if possible. When you look at the grades of adverse events in the summaries of each of the drugs below, you’ll see that the percentages of patients experiencing an adverse event at all grade levels can be quite high in some cases. Bottom line: ADT + ARPI will adversely impact you and your quality of life in some shape or form. It’s just a matter of degrees.

ERLEADA® (apalutamide) Side Effects

The most common side effects include:

  • Feeling very tired
  • Joint pain
  • Rash
  • Decreased appetite
  • Fall
  • Weight loss
  • High blood pressure
  • Hot flash
  • Diarrhea
  • Fracture

Some of the possible, more severe side effects include:

  • Heart disease, stroke, or mini-stroke
  • Fractures and falls
  • Lung problems
  • Seizures
  • Severe skin reactions

And you can see what percent of the time that patients experienced some of these side effects by adverse event grade in section 6.1 of the prescribing information HERE or in these tables HERE. Some of the Grade 3 or 4 adverse events occurred as much as 8% of the time.

NUBEQA® (darolutamide) Side Effects

The most common side effects include:

  • Increase in liver function tests
  • Decreased white blood cells (neutropenia)
  • Feeling more tired than usual

Some of the possible, more severe side effects include:

  • Heart Disease
  • Seizure

And you can see what percent of the time that patients experienced some of these side effects by adverse event grade in section 6.1 of the prescribing information HERE. Some of the Grade 3 or 4 adverse events occurred as much as 4% of the time.

Xtandi® (enzalutamide) Side Effects

The most common side effects include:

  • Muscle and joint pain
  • Feeling more tired than usual
  • Hot flashes
  • Constipation
  • Decreased appetite
  • Diarrhea
  • High blood pressure
  • Bleeding problems
  • Falls
  • Bone fractures
  • Headache

Some of the possible, more severe side effects include:

  • Seizure
  • Posterior Reversible Encephalopathy Syndrome (PRES) (Involves the brain with seizure or quickly worsening symptoms such as headache, decreased alertness, confusion, reduced eyesight, blurred vision or other visual problems)
  • Allergic reactions
  • Heart disease
  • Falls and bone fractures
  • Swallowing problems or choking (because of the size of the pills)

And you can see what percent of the time that patients experienced some of these side effects by adverse event grade in section 6.1 of the prescribing information HERE. Some of the Grade 3 or 4 adverse events occurred as much as 9% of the time.

Eligard® (leuprolide acetate) Side Effects

The most common side effects include:

  • Hot flashes
  • Fatigue (tiredness)
  • Testicular atrophy
  • Weakness
  • Muscle pain
  • Dizziness
  • Clamminess
  • Testicular shrinkage
  • Decreased erections
  • Enlargement of breasts
  • Decrease in bone density

Some of the possible, more severe side effects include:

  • Heart attack
  • Elevated blood sugar and increased risk of developing diabetes
  • Convulsions

And you can see what percent of the time that patients experienced some of these side effects by adverse event grade in section 6.1 of the prescribing information HERE.

Anecdotal Side Effect Experiences

One of the side effects that isn’t specifically mentioned above was cognitive decline. In a study, it was shown:

Patients with advanced prostate cancer treated with enzalutamide (Xtandi) had a significantly greater decline in cognitive function compared with those who received darolutamide (Nubeqa), according to results from a phase II trial.

Median cognitive change in the maximally changed cognitive domain (MCCD) from baseline to 24 weeks was -15.8% for those receiving darolutamide versus -36.1% for those receiving enzalutamide (P=0.009), reported Alicia Morgans, MD, MPH, of the Dana-Farber Cancer Institute and Harvard Medical School in Boston.2

I’m a member of an online support forum for advanced prostate cancer on HealthUnlocked, and one of the common themes of other patients who have been on Xtandi® (enzalutamide) is significant “brain fog.” Many had such severe side effects that they stopped taking Xtandi® (enzalutamide), with one patient calling it “poison.”

Now, I take what’s said in forums like that with more than a grain of salt. There’s definitely some selection bias going on—patients who are having difficulties with their treatments are more likely to talk about them in a forum than those whose treatments are going well. We just don’t know how many are out there who have minimal side effects and tolerate the treatments well.

Drug Interactions

I surprise medical professionals when they ask me to list my current prescriptions because I only have one: amlodipine to manage hypertension. I checked on Drugs.com to see if any of the four drugs above will interact with the amlodipine:

  • Eligard® (leuprolide acetate) = Unknown interactions
  • ERLEADA® (apalutamide) = Major interaction
  • NUBEQA® (darolutamide) = Minor interaction
  • Xtandi® (enzalutamide) = Major interaction

Because a well-known side effect of ADT is osteoporosis/bone density loss, patients are usually given calcium and vitamin D supplements to slow or minimize the loss. Interactions with calcium and vitamin D:

  • Eligard® (leuprolide acetate) = Unknown interactions
  • ERLEADA® (apalutamide) = No information
  • NUBEQA® (darolutamide) = Unknown interaction
  • Xtandi® (enzalutamide) = Moderate interaction

Clearly, we’re going to have to have a discussion about the amlodipine before starting anything because it has made a difference. My systolic number has dropped by 33 points and my diastolic number has dropped by 24 points. Part of that may be the amlodipine, and part may be the fact that I’ve lost 44 lbs. / 20 kg since starting the amlodipine (or both).

Timing of Starting ADT + ARPI Therapy

You may recall back in April, I shared an AnCan Foundation video of a seminar featuring Dr. Ravi Madan and Dr. Melissa Abel from the National Cancer Institute (NCI). In it, they raise the notion that with new PSMA PET scans, we may be moving too quickly to treat biochemically recurrent prostate cancer and may be overtreating patients, subjecting them to the side effects of ADT either unnecessarily or prematurely.

From the video notes:

Dr. Paul Schellhammer, said in the meeting, ‘it’s like listening 15 years ago to the folks who began to promote active surveillance (in first line treatment).” Dr. Madan and Dr. Abel have collected solid data from around 150 patients that suggests men with slow PSA doubling times can “play the long game” as Dr. Ravi calls it, and defer active treatment when their disease recurs.

Just like the concept of active surveillance, this approach does seem counterintuitive. It’s a novel take that probably isn’t that widely accepted yet, but when you watch the video and look at the data, it makes sense. They’re not saying that treatment won’t be required at some point; they’re just making a case for delaying the treatment in order to maintain quality of life, especially if nothing is showing up on scans.

One difference in their approach is that they define a high risk PSA doubling time to be in the three to six month range, instead of the widely accepted less than nine month range.

Dr. Madan wrote a very interesting paper on this topic that I highly encourage you to read. It was published in the Journal of Clinical Oncology in September 2022, With New Technology Comes Great Responsibility: Prostate-Specific Membrane Antigen Imaging in Recurrent Prostate Cancer

Summary

I have to admit that the NCI doctors have me thinking more and more about the timing of starting this combination therapy because, let’s face it, no one leaps at the opportunity to go on hormone therapy given the “fun” side effects that it brings.

When I was on Eligard® (leuprolide acetate) during my salvage radiation therapy, I tolerated it probably better than most men do. I had mild to moderate fatigue; was more emotional; lost most of my libido; but avoided hot flashes, weight gain, and some of the other common side effects. The unknown is adding the ARPI to the mix.

Of the three ARPI agents available, Xtandi® (enzalutamide) seems to be the worst when it comes to side effects and patient experiences relayed in the prostate cancer forum. Of course, that’s the ARPI that the VA apparently uses in its treatment. NUBEQA® (darolutamide) seems to have the similar results when it comes to delaying metastasis with fewer side effects,3 so you can bet I’ll be having a conversation about this option with the medical oncologist when the time comes.

If you were to ask me right now what I plan on doing, my short answer is, “I don’t know.”

On the one hand, my PSADT hovering right around the action point and has been for some time now. Is that alone reason to act?

In his video, Dr. Madan basically concluded that, if your PSADT is >6 months and you don’t have any cancer showing up on scans, you can just continue to monitor the PSA without starting the hormone therapy—in other words, active surveillance for biochemical recurrence. As I recall, he observed patients for several years with increasing PSAs and consistently negative scans. Do I roll the dice based on his research and conclusions?

That’s one of the reasons that I want to have at least one more scan before committing one way or the other.

Once again, I’m in yet another decision dilemma with the science pulling in different directions.

Depending on what the VA MO says, I may also solicit the input of the UCSD MO one more time and go from there. I’m also open to thoughts and experiences from you.

More to come, that’s for sure.

Be well!

  1. Arlen PM, Bianco F, Dahut WL, D’Amico A, Figg WD, Freedland SJ, Gulley JL, Kantoff PW, Kattan MW, Lee A, Regan MM, Sartor O; Prostate Specific Antigen Working Group. Prostate Specific Antigen Working Group guidelines on prostate specific antigen doubling time. J Urol. 2008 Jun;179(6):2181-5; discussion 2185-6. doi: 10.1016/j.juro.2008.01.099. Epub 2008 Apr 18. PMID: 18423743; PMCID: PMC2667701. ↩︎
  2. https://www.medpagetoday.com/meetingcoverage/asco/121394 ↩︎
  3. Nubeqa Combo Improves Outcomes in Metastatic Prostate Cancer ↩︎

Header image: Boats in San Diego Harbor, California

Month 186 – What a Month

On By DanIn Hormone Therapy, Incontinence, Prostate Cancer, RecurrenceLeave a comment

We last left our hero with the beginning of a head cold after his scan and oncologist meeting. And, boy, what a head cold that turned out to be.

Normally, a typical head cold lasts a week or so and you’re back to normal. Not this time. This was the most stubborn virus, hanging on for three weeks and change. It was ugly. So ugly, in fact, that I went to the doctor for help.

The cold started out with a light fever and lots and lots of coughing. Of course, when you have your prostate plucked from your pelvis and they zap what’s left, stress incontinence is an issue. If I have a light cough, I’m generally okay, but with this virus, I was having deep coughs where it seemed as though I was trying to turn my lungs inside out. I had to switch to the heavy-duty incontinence pads and, even then, I blew out two of them with coughing fits, leaking into my underwear and jeans. Messy and not fun.

The doctor gave me something to calm the dry coughs, and that had a bit of a positive effect. But then my sinuses filled, my nose was running, and I was coughing up phlegm so I switched to something else to deal with that.

Long story shorter, it’s pretty much all behind me now, and that’s a good thing. Maybe I’ll go back to the COVID days and wear masks when riding packed transit or wandering the halls of hospitals.

While I was down for the count, I had plenty of time to dig into more about androgen deprivation therapy (ADT), its pros and cons, and the timing of starting it. Sadly, I could find information that supported pretty much any perspective you wanted, which really isn’t all that helpful.

On the whole, it appears the current thinking is to start ADT sooner rather than later, and to use a doublet therapy, i.e., ADT + ARPI. This seems to delay time to metastasis, but has the obvious cost of substantial side effects.

On a related note, I called UCSD on 30 April to set up a second opinion appointment with the medical oncologist that’s well-respected and that the VA called to consult on my case two years ago. Because I was already in their system, that helped a little. I had to update my insurance information, and they said they’d get back to me in 2-3 business days. They didn’t, so I called back today, 11 May. They put me on the “high priority” call-back list this afternoon to be called back “between now and 48 hours.” Okie-dokie. And they say scheduling appointments at the VA is difficult…

I’ve got a number of appointments coming up at the end of May and into June:

27 May – PSA Test and other pre-ADT labs ordered by the oncologist

2 June – Meeting with VA medical oncologist

17 June – Dexa Scan bone density scan for baseline

23 June – Meeting with VA urologist

With luck, I’ll be able to add the UCSD medical oncologist to that list as well.

I really want the PSA test results—specifically, the PSA doubling time—to be a guide into what happens next and when.

One of the other things that I dug into a bit when I was down with the cold was how many values to use when calculating PSADT. As expected, there were dozens of different answers. Grr. My pea-sized engineer’s brain decided that I’ll use the last four PSA values if they cover at least a year. To me, that would render more useful information that shows the latest trend versus loading in all data points that may skew the results to show something less aggressive. But what do I know?

Using the Memorial Sloan-Kettering PSADT calculator and four data points over the last year, my PSADT is 8.9 months. Using a second calculator I found, it’s 8.21 months. For grins and giggles, I plugged in the last two years worth of data, and my PSADT was 10.4 months. Doing my research on ADT, PSADTs in the 6-9 month range seemed to be a trigger for action.

My PSA in March was 2.52 ng/mL, and I suspect it will be approaching 3.0 ng/mL at the end of May.

Obviously, this summer will be a series of data collection, evaluation, and big decision-making. Yippee! <sarcasm font>

Stay tuned for more.

Be well!

Header image: Torrey Pines State Beach, California

Month 183 – Flu Bug

On By DanIn Emotional Aspects, imaging, Incontinence, Prostate CancerLeave a comment

The next time I come down with the flu, I’ll be sure to send out some insider trading information: Buy stock in incontinence pads, ASAP.

Just over three weeks ago, the flu bug came home to roost, and it kicked my ass. Chills, aches, fever, and coughing. Lots and lots of coughing. The worst symptoms lasted about eight days, but the coughing remained after the chills, aches, and fever were gone.

Of course, coughing is one of my stress incontinence triggers. A small, light cough, and I can hold my own. But these were heavy, cough-up-your-toenails coughs which caused significant incontinence issues. It sucked. I was going through multiple incontinence pads each day and night.

A friend had the same bug back in December, and she said it took three weeks for the coughing to subside. That seems to be my experience, too. I’m finally just about back to normal.

Oh well. I survived and it’s behind me.

In three weeks, I’ll go for my next PSA test (2 March) and the PSMA PET scan (4 March). It will be interesting to get the results of both.

I’m hoping that the PSMA PET scan shows something this time. My last PSA on 1 December 2025 was 1.57 ng/mL, and I’m guessing this one will be approaching the 1.7 to 1.9 range. At that PSA level, there should be a slightly better than 80% chance of finding something.

An old boss was known for saying, “If you can’t stand the answer, don’t ask the question.” As eager as I am to have an answer, I’m not so sure how I’ll respond if the answer comes back, “It’s metastasized.” Logically, I know that’s the likely next step in the progression. Psychologically—emotionally—I’m trying to prepare myself for that possibility.

Yes, I know that hormone therapy and other advanced treatment options will be able to keep me around for a long time even if it has metastasized, so I’m not worried about keeling over in the next six months. I guess it’s the fact that I’ll have passed a point of no return, and my future will become a balancing act between slowing the cancer’s spread and maintaining a decent quality of life. C’ést la vie.

Of course, if the PSMA PET scan comes back without any evidence of cancer or metastasis, it may be time to try a different imaging method. That will kick this can a few more months down the road.

With luck, it will all come together when I meet with the urologist on 24 March and we go from there.

Be well!

Header image: Silver Strand State Beach, Coronado, California

Month 181 – Physical Therapy for Incontinence

On By DanIn Incontinence, Prostate Cancer, Side Effects, Treatment2 Comments

I’m of the mind that PT stands for Pain & Torture, not physical therapy. (Okay. I exaggerate.)

During my appointment with the urologist back on 7 October, we talked about how my incontinence seemed to be slowly worsening post-radiation. One of the options that he offered up was pelvic floor therapy, and I decided to give that a try.

Unfortunately, the VA doesn’t offer that therapy in-house, so they had to arrange for community care. That process took until mid-November to get the appointment set up, and I just had my first appointment last week.

I was expecting more instruction on Kegel exercises, perhaps with the biofeedback device that they used on me pre-surgery to train me on how to do the exercises. But that’s not what’s happened so far.

The physical therapist explained that many of the muscle groups in your legs and torso can have an impact on your pelvic floor muscles, too, as they’re all connected as part of a larger system. By stretching and strengthening them, we could see improvements in the pelvic floor. At first, it sounded like a bit of phooey to me, but I’m approaching this with an open mind and giving it a shot.

I’ve had just two sessions so far, and we’ve focused mainly on stretching exercises impacting my hamstrings, glutes, calves, and torso, as well as doing squats and walking on a treadmill. Some of the stretches are bordering on turning me into a contortionist, which this soon-to-be 68-year-old body is fighting tooth-and-nail (hence, “Pain & Torture”). But they’re low impact and we’re taking it slowly so I don’t injure myself.

The other thing that she had me doing was documenting my fluid intake, output, and number of incontinence leaks for at least three days. We’re trying to establish a baseline against which we can measure any improvements. She had a hardcopy log which I quickly converted into a tracking spreadsheet. (You know I had to!)

She also made some recommendations to improve my diet and the types/quantities of beverages that I consume (less soda, more water).

Of course, I have to keep up with these exercises daily at home.

On the one hand, I’m a bit skeptical about this approach but, on the other hand, I do feel as though that, even after one week, I’ve noticed that I seem to be having fewer leak episodes and, the ones that I do have, seem to be smaller in size. We’ll let my spreadsheet determine if there’s a true trend, or if this is all in my head.

I have another appointment next week and then, in the new year, she mentioned that we might cut back to every other week sessions or even monthly sessions, depending on the progress that’s made.

One thing that I am a little concerned about is the potential cost of this.

Yes, the VA is covering the costs, but what many don’t realize is that some of us, based on our eligibility criteria, have to pay co-pays for our visits. Seeing the specialists—including the urologist—costs $50 per visit. Seeing a PT every week would rack up significant costs over time, and I’m not sure if the VA has an out-of-pocket cap on how much a veteran pays. (I’ll have to check into that.)

Assuming the holidays don’t mess it up, my appointment with the urologist to review my PSA results is on 30 December. We’ll definitely be talking about another PSMA PET scan and getting medical oncologists involved in my case.

Wishing everyone a great holiday season and a healthy, prosperous New Year!

—Dan

Header image: Botanical Building in holiday lights, Balboa Park, San Diego, California

Month 177 – Urinary Changes (?) & Appt. Update

On By DanIn Prostate Cancer, Side EffectsLeave a comment

Ugh. Monday night was brutal.

Excuse my use of the vernacular, but I had to pee seven times through the night, and that’s a record for me.

I did what I call a preemptive pee before going to bed at 10:02 p.m., and then got up to pee again at 12:11 a.m., 1:06 a.m., 1:47 a.m., 2:48 a.m., 3:49 a.m., and 7:07 a.m.1 It’s nuts. And exhausting.

I also try to keep track of my fluid intake and to slow it down before going to bed. Monday, I joined a friend for happy hour and had two pints of beer between 4 p.m. and 6 p.m., and then had another 12-ounce can of soda at 7:40 p.m.

While Monday night’s experience isn’t typical, I have noticed a trend in that general direction since the salvage radiation therapy three years ago, and in the last few months in particular.

Because it wasn’t a huge issue, I wasn’t doing dedicating tracking, but I would say that I was going to the toilet one to three times a night, and maybe four times on a bad night. Recently, it seems it’s more like two to four times per night.

In writing the above, I was going to make the comment that I stay away from caffeinated sodas because I thought that caffeine was a diuretic. I went to confirm that via a Google search, and then went a little deeper into the rabbit hole and asked if beer was a diuretic.

Of course, the answer came back that alcohol, in general, is a diuretic which I think I kinda-sorta knew but had forgotten. In that search, I came across a study entitled, The Diuretic Action of Weak and Strong Alcoholic Beverages in Elderly Men: A Randomized Diet-Controlled Crossover Trial.

It was a small study involving 20 men that measured, among other things, urine output at four and 24 hours after drinking alcoholic and non-alcoholic versions of beer and wine; spirits; and water. The one thing that surprised me was how much cumulative urine output there was for both beer and non-alcoholic beer, especially when the test subjects were given only 250 ml of beer (a U.S. pint is 473 ml). There was essentially no difference in output between the alcoholic beer (AB) and the non-alcoholic beer (NAB).

One question that I would have for the researchers is that, if alcohol is a diuretic, why is there essentially no difference between the alcoholic and non-alcoholic beer outputs?

Needless to say, this little exercise opened my eyes and I’ll definitely consider the timing and quantity of any beer consumption going forward.

On a related note, Tuesday, I had a 16-ounce soda around 6:30 p.m. that took until 8 p.m. to finish, and I only peed 3 times through the night.

Also on a related note, it seems that my flow, while constant and steady, seems to have slightly less pressure behind it. That has me wondering if there are post-radiation strictures forming or if there may be a growth forming in the area as my PSA increases. That, or it could all be in my head. I’ll keep an eye out for changes over time.

My next appointment with the urologist was scheduled on 30 September, but I received a call from the VA this morning cancelling the appointment. I can’t recall the VA having cancelled an appointment on me at any other time during the 12 years I’ve been going there. (They have, however, called me if an earlier appointment became available.)

The scheduler said that the urology clinic would be closed for the day so that they could interview new residents. I found that interesting because I recently read an article that doctors and nurses who were extended job offers by the VA between January and March 2025 were rejecting those offers at a rate of nearly 40%, which is quadruple the rejection rate during the same period in 2024. Given the uncertainty and instability that this administration has placed on the VA with its announced cuts, medical professionals simply don’t want to risk working there.

The first available appointment for me was 30 December 2025, so I booked it.

I did confirm with scheduler that there is an order in for a PSA test, and I can go in for the lab work on or after 1 September 2025. I mentioned to her that, if the PSA results came back significantly worse, I would be writing the urology clinic and asking for an appointment much sooner.

That’s it for now. Remember, that September is Prostate Cancer Awareness Month, so please share your story with others just to educate and increase awareness.

Be well!

1 I use an app called Simple Time Tracker to record each time I pee and when I drink. I use a widget on my phone’s home screen to just tap once which makes it very easy to record the event. The app, though, is set up to measure the duration of the event, so I have to tap a second time to stop recording the duration. Of course, it has the ability to export the data to—you guessed it—a spreadsheet.

Header image: Petco Park, home of the San Diego Padres baseball team, San Diego, California

Day 5,188 – A Wee Problem

On By DanIn Emotional Aspects, Incontinence, Prostate Cancer, Side Effects5 Comments

I’ve been debating whether to write this post but figured that I’ve never shied away from sharing the gory details of the total prostate cancer experience. So if you don’t want to read about my latest adventure with incontinence, you can check out the trip report of my trip to Death Valley last week.

In fact, the issue began as a result of my trip to Death Valley.

After four days of standing in the middle of the desert pretty much solo the entire time, I returned home Wednesday evening. Thursday morning, I can off to the clinic for my PSA test (it took 7 minutes and 38 seconds from check-in to walking out the door). But by Thursday afternoon, I was feeling a bit wonky.

By Thursday night, I was down for the count with a full-blown head cold/flu. I was both baffled by how I contracted it, and annoyed that I had. It had been several years since I’ve had a cold or flu.

Unfortunately, one of the symptoms that hit me hard and caused the incontinence issues was a nagging tickle in the back of my throat that had me coughing pretty consistently and, in many cases, pretty intensely. It sucked.

It sucked because coughing is perhaps the greatest trigger for my stress incontinence. The harder I cough, the more I leak.

I wear Depend Shields in my daily life, and I can get by with one or two pads a day. But by the weekend, the coughing and resultant leaking exceeded their capacity. I had one coughing fit that had me fill the pad, overflow, and soak my jeans. Not fun. Through the weekend and into early this week, I was going through multiple pads a day and doing several loads of laundry.

I toyed with the idea of running to the store to get Depend Guards, the pads with more absorbency and capacity, but I didn’t want to risk embarrassing myself in the middle of Aisle 12 at the grocery store. Plus, I was probably as contagious as Typhoid Mary, so that wouldn’t have been a good thing, either.

I was taking some cold/flu medicine that helped reduce the cough—the root cause of my issue—and I just rode out the storm for a few more days. Today, a week after this all kicked in, I’m back to my good ol’ self getting by with the occasional drip and dribble.

The lessons learned for me are to keep the cough medicine on hand to help reduce the root cause, and to keep a supply of Depend Guards on hand to do a better job of controlling the mess.

Now you know why I may have been hesitant to share this. But, hey, it’s for educational purposes, right?

On a related note, I was successful in getting my appointment to review my PSA results moved to an earlier date. It’s now 18 February 2025 (four weeks is better than four months). I’m okay with that.

Unless you’ve been living under a rock the last two weeks, you already know that southern California has been ablaze with wildfires. Luckily, up until this point, they have stayed clear of San Diego for the most part. Until today.

This little gem popped up about 6 miles / 10 km from my house this afternoon:

View of the Border Fire on Otay Mountain taken from the vacant lot down the street from my house.

It’s grown to about 600 acres / 240 hectares in about six hours, and we’re expecting high Santa Ana winds this evening. It’s in a very mountainous area, and air crews have been working the scene all afternoon. Luckily, it’s adjacent to a large reservoir, so there’s plenty of water for the helicopters to access. We also have rain in the forecast for the weekend for the first time in months (San Diego has had the driest start to the wet season since they began keeping records in 1850. We’ve had only 0.14 inch / 3 mm of rain since 1 July 2024.)

Of course, I’m concerned and I’ve made preparations to leave if need be. But given the location, the fact that the reservoir is between me and the fire, and the prevailing winds are keeping the smoke south of me, I’m hopeful that my neighborhood will be unaffected.

I’ll keep everyone updated over the next day or two.

Be well.

Header image: Courtyard at The Ranch at Death Valley National Park, California

Day 5,134 – Clean Pathology Report

On By DanIn Prostate Cancer, Radiation Proctitis3 Comments

Just a quick update to report that the two polyps removed from my colon during the colonoscopy came back as “tubular adenoma” polyps, which are the pretty normal, precancerous polyps that are found in most patients. Less than 9% of tubular adenomas become cancerous.

The doctor recommends doing a follow-up colonoscopy in three years.

On a related note, the blood in my stools has virtually disappeared since the procedure. There have been only two incidents where there was even a faint hint of blood, so that’s a good thing.

Hard to believe that December starts tomorrow. How’d that happen?!?

Be well.

Day 5,127 – Colonoscopy Results

On By DanIn Prostate Cancer, Radiation Proctitis8 Comments

No one can say I do things half-assed. I got a perfect 9/9 score on the Boston Bowel Preparation Scale. Clean as a whistle! 🙂 (I didn’t even know that there was such a scale.)

Yesterday’s colonoscopy went well, although it was a little different from the last one I had six years ago. The last one, I was knocked out with anesthesia and don’t remember the procedure at all. This one, I had “moderate (conscious) sedation” and was able to have conversations with the team and watch the procedure on a monitor, although my mind was drifting in and out of focus throughout.

Before we started, I had a good conversation with the doctor about my salvage radiation therapy and the possibility of radiation proctitis given the occasional blood in my stools. She was appreciative of the detailed information to help her in doing the procedure. I really stressed that I didn’t want the scope or the inflation of my colon to do more damage than what may already be there.

There were two polyps that were removed during the procedure and will be sent off for pathology. The first was in the transverse colon, and the second in the sigmoid colon, not far from the rectum. (I didn’t think to ask how long it will take for the pathology to come back, but I’m assuming it will be about two weeks.)

The sigmoid polyp was described as, “erythematous and friable.” Erythematous means the mucosa is red and inflamed due to a buildup of blood in dilated capillaries; friable describes how easily the mucosa can be damaged by a biopsy instrument or endoscope.

Because I didn’t read her printed report—with 13 color photos and map of my colon—until I got home, I didn’t get to ask if she thought that could have been caused or aggravated by the radiation therapy being closer to the rectum.

She also found “a few non-bleeding small angioectasias in the rectum, consistent with chronic radiation proctitis,” which are dilated, thin-walled blood vessels (think spider veins) that can occur anywhere in the gastrointestinal (GI) tract. I watched her zap those with “argon plasma coagulation (APC).” She described that as cauterizing the vessels to stop them from possibly bleeding into the GI tract.

Pending the outcome of the pathology on the polyps, she recommended a follow-up colonoscopy in three years. Yippee!

Time will tell if the sigmoid colon polyp removal and APC did the trick to stop the blood in my stools (hopefully, there are no new side effects from the APC). I guess time will tell on both counts.

Next up: Get through the holidays and PSA test sometime in late January.

Happy Thanksgiving! (I’ll get a 0/9 score after Thanksgiving dinner. 🤣)

Header Image: San Diego, California skyline at dusk.

Day 5,118 – Urologist Visit

On By DanIn Hormone Therapy, Prostate Cancer, Radiation Proctitis9 Comments

I met with the urologist this afternoon to go over my most recent PSA test results and the plan going forward. In a nutshell, we agreed to remain in limbo for another three months and retest the PSA in January and consider a PSMA PET scan if warranted at that point. (She was a bit skeptical that the PSMA PET scan would be conclusive even at my current PSA of 0.69 ng/mL.)

The urologist thought it was a little premature to start talking about androgen deprivation therapy, but recognized that that’s the next likely step down this path. I mentioned that, when I met with the urologist and medical oncologist in February, one suggested ADT at metastases and the other suggested starting at a PSA of 2.0 ng/mL. She said she could understand both positions.

Bottom line is that I continue to be in this sort of “no man’s land” of prostate cancer. We know it’s there; we just don’t know where, and we don’t want to pull the trigger on ADT prematurely. So more waiting.

One other thing that we discussed was radiation proctitis.

Graphic Biology Ahead

I’ve been sitting on this little tidbit for a while now, but I’ve been noticing blood in my stools. It initially appeared as spots a little smaller than a dime coin (~ 1 cm) but, over time, it has subsided to a small streak or a hint of blood. You know me: I had to create a spreadsheet to track it, and it’s been occurring in about ten percent of my bowel movements. That makes me feel better that it isn’t happening each and every time—that might indicate a larger problem if it were happening every time.

Fortunately, I haven’t had the diarrhea or mucus discharge that can come with more severe cases of radiation proctitis.

I mentioned this to my primary care physician during my appointment on 4 November, too. Both he and the urologist recommended a colonoscopy to check out what’s really going on. That joyful experience is scheduled for Friday, 22 November. Yippee!

I did come across this continuing education paper that gives a good overview if you’re really interested in learning more:

Radiation Proctitis

So the journey continues. Stay tuned for the next installment.

Header image: San Diego skyline and Mission Bay from Kate Sessions Memorial Park

Fourteen Years

On By DanIn Emotional Aspects, Prostate Cancer, Side Effects7 Comments

Yep. It really has been fourteen years that I’ve been on this adventure. That’s a good thing considering that too many men don’t make it this far after their diagnosis. Of course, it would be better if none of us ever had to go down this path in the first place, but these are the cards that we’ve been dealt and we’re forced to soldier on.

In the past, I’ve railed against people who said that prostate cancer is an “easy cancer.” My views on that may be evolving over time into it being an easier cancer. Even that may not be an accurate way of describing it.

The treatment for other common cancers can be much more aggressive, adversely impacting quality life in much harsher ways much earlier on than some of the initial treatments for prostate cancer. With prostate cancer, you may have a snip-snip here or a zap-zap there and you’re on your merry way for years with a few possible side effects. With other cancers, you may have surgery, radiation, and chemotherapy all coming right out of the gate and, in many cases, your chances of making it to five years are quite low (see five-year survival charts below).

However, with prostate cancer you can be on this ride for decades before you get to the harsher advanced treatments like hormone therapy and chemotherapy. In the interim, though, you’re dealing with the physical impacts of early treatment (incontinence, impotence, etc.), as well as the psychological and emotional stress associated with each new PSA test result every three to twelve months over those same decades. Over time, both of those impacts—the physical and emotional—take their toll.

Don’t get me wrong. I am thankful that, out of all the cancers out there, I had to get the one with one of the highest survival rates of all of them. I guess I just want folks to know that it’s still cancer, and it’s cancer that you have to deal with—in ways big and small—on a daily basis for decades.

It may be easier, but it isn’t easy.