Month 129 – Incontinence Run Amok

Okay, if you don’t want to read a frank discussion about incontinence, then CLICK HERE to go find some cute kitten and puppy videos. Otherwise, read on…

In short, I don’t know what in the hell is going on with my incontinence. For years, I’ve been able to get away without pads because I was routinely “dry.” A sneeze or a cough might cause a few drops to come out, but that was it.

But in the last month or so, things have changed considerably for the worse. I’m back to wearing Depend Shields for Men on a daily basis, but I’m discovering that those may not be enough protection.

A week or so ago, I was watching TV on the sofa in the family room and had to get up to go to the bathroom. It wasn’t anything urgent—just a normal call from nature. As I stood up, my bladder just emptied itself right there on the spot. Of course, the shield wasn’t equipped to handle that and my trousers were soaked.

Today at work near the end of the day (thankfully!), I had a tickle in my throat and started a mild coughing fit to get rid of it. With each cough, I could feel a squirt going into the pad and, before long, the pad was at capacity and I could feel my trousers begin to get wet. (I wear only black trousers for this reason—to help hide any “accidents.”) What shocked me, though, was there was an area of wetness that extended to my shirt about 10 cm/4 inches above my belt line! “How the f*ck did that happen?!?” I have no idea.

Needless to say, to have this much change in such a short period of time is more than disconcerting. In fact, you could say that I’m pissed off at getting pissed on. 🤬 (Yes, that’s dark prostate cancer humor.)

I did check online for the lab results for the UTI tests that we did last week, but I only see the bloodwork results and not the urinalysis results. I emailed the doctor to find out what’s going on and reported the last few incidents, too.

Edit after posting:

I’ve tried to determine what’s causing this, but have been coming up empty. I haven’t changed the volume of liquids that I drink on any given day. It doesn’t seem to be restricted to a certain time of day. My weight, although more than I would like it to be, has been pretty stable throughout the last year or two. It’s mystifying and makes me wonder if it’s related to my increasing PSA somehow.


There’s no update to share on the scheduling of the 68Ga-PSMA-11 PET scan. I figure I’d let the administrative wheels churn through the end of this week before asking the doctor on his progress with the referral.

Be well!

Day 3,819 – Doctor’s Visit

The dreaded tools of the DRE trade.

My visit to the urologist this afternoon went just as expected, and even a little better.

With the San Diego VA Medical Center being a teaching hospital, it’s rare that I see the same doctor twice. Because I liked the doctor I saw last time because of the conversation we had and the plan that we mapped out together, I specifically requested to see her again this time. Unfortunately, a young resident showed up in her place.

That actually may have worked to my advantage.

Dr. K started the conversation by asking if I had come to a decision as to whether I wanted to do salvage radiation therapy or hormone therapy. I was a bit taken aback by that—”Haven’t we skipped a few steps here, Doc?”—but then I remembered the way that Dr. L wrote up her notes from my visit with her, it would be easy for him to come to that conclusion.

I filled in a few of the blanks with Dr. K regarding our plan to follow up the negative CT and bone scans with an Axumin or PSMA PET scan in hopes of finding the cancer before making the SRT vs. ADT decision. He dutifully reminded me that either or both scans could come back negative, too, meaning that the cancer was still likely in the pelvis or prostate bed.

Interestingly, when we were talking about the merits of the Axumin and PSMA PET scans, he immediately went to, “Why even bother with the Axumin scan; go straight to the PSMA scan.” I didn’t even have to nudge him in that direction. He and I were on the same page.

To his knowledge, though, SD VAMC had not yet referred anyone to get a PSMA PET scan, but he seemed eager to figure our how to make it happen and have me be the first (or among the first) to be referred. He wasn’t even sure where to begin, so I told him.

Instructions for PSMA Referral

I opened my file folder that I had with me and pulled out the one-page sheet that I had put together, stepping him through the referral process that UCLA had shared with me. It was all there for him, and he asked, “May I keep this?”

He did admit, though, that he had no idea how long it may take to get approval from the hospital team before he could even ask for the referral, so this may play out over a few weeks or longer. Rest assured that I’ll keep on top of this, asking for periodic updates.

I’m pretty excited that we’re moving in the direction of going straight to the PSMA PET scan, but also recognize there can be a number of administrative twists and turns along the way.

In the interim, we agreed to test my PSA again in early November, keeping on a four-month testing cycle. I’m okay with that while we’re trying to sort everything else out.


We also talked about my incontinence episodes becoming more frequent and more substantial in the last 6 weeks or so. He wanted to rule out a urinary tract infection, so he sent me off for some labs and we’ll see what they yield.

These episodes have put me back in incontinence pads for the last few weeks. Before, a sneeze or a cough would yield a few drops; now, they yield a squirt. Not good.

More to monitor and report on going forward.

That’s it for this post.

Be well!

Month 125 – Urinary Frequency

The only constant is change, and things have been changing for some inexplicable reason on the urinary frequency front, especially at night.

For years after my surgery, I could make it through most nights without having to get up and use the toilet. If I did, it was only once per night. In the last month or two, I’ve been noticing that I’ve been getting up two, three, and even four times a night to drain my bladder. That certainly impacts quality and quantity of sleep.

I wish I had an explanation for it. I really haven’t changed any drinking habits where I’m drinking lots of liquids all evening long or just before going to bed. It’s just happening.

Perhaps the only plausible explanation is that I have been trying to go to bed about an hour to an hour and a half earlier than I used to (I was a terrible night owl), and that means longer time in bed. I’ll just start a little spreadsheet to track it all to see if I can see a pattern emerging. (Nerd!)

My next PSA test will be near the end of June with the doctor’s appointment on 6 July 2021.


Other than that, things are slowly improving in San Diego. we’ve moved from the Purple Tier to the Red Tier and now to the Orange Tier, meaning that things have become less and less restrictive on the COVID front. Let’s hope that we continue to move in the right direction.

As far as vaccinations are concerned, 25% of all adults in San Diego are fully vaccinated, and 50% have had at least one dose. That’s good.

Stay well!

Month 124 – Prostate Cancer a Chronic Illness?

It’s tough to come up with a decent prostate cancer-related topic for this month. I guess when things are going relatively well, that’s a good thing.

I’ve gotten to the point where I think of this more as a chronic illness like arthritis than I do a potentially life-ending cancer. Last month’s bump up in my surprise PSA test hasn’t fazed me at all. It is what it is. Move on. Maybe that’s a mistake.

I will say, though, that I’ve probably packed on a couple of pandemic pounds over the last twelve months of quarantine and work from home and, when that happens, I tend to see a slight uptick in minor incontinence episodes. Nothing major. A little dribble here, a little dribble there. More a nuisance than anything. Time to get more active and shed a few of those pounds.

Speaking of getting active, I did just that after my last post. I took my first ever trip to Death Valley. I figured if I can’t socially distance there, where can I socially distance? It’s a remarkable place. Going in February is one of the best times to go. Temperatures were in the low 70s °F/ 20s °C during the day and around 45 °F/7° C at night. Not bad at all.

After visiting Death Valley, I drove to the Valley of Fire just about an hour northeast of Las Vegas. That was amazing as well. If you’re looking for a diversion, you can check out my write-up and photos HERE. My apologies for the slow-loading photos. I uploaded the full resolution versions, but if you zoom in on any of them, the detail is incredible.

I’ve got King’s Canyon/Sequoia and Yellowstone National Parks on the agenda for later this year barring any massive changes in the pandemic status. Once this is all lifted and international travel is allowed again, New Zealand has made it to the top of my bucket list. Fingers crossed.

That’s about it for this installment.

Stay well!

Day 3,302 – Jets, Pads, and Discs

This is the famous Jet d’Eau in Geneva, Switzerland. It shoots 500 liters / 130 gallons of water per second 140 meters/460 feet into the air. Keep that image in mind.

DSC00602

On Thursday, 14 November, I went and got my obligatory seasonal flu shot—a necessity working in a hospital. It was no biggie.

Friday afternoon, though, I was feeling a bit wonky—a bit of a chill and general tiredness—but it only lasted a brief while. I went to an event for work later that evening and did just fine.

Saturday morning was fine, too. I threw my camera in the car and I was headed out to take some photos. Before I got out of town, though, the chills and wonky feeling returned, a little more intense than the previous day, so I bailed on the photography and went back home for a quiet evening of rest just in case something might be taking hold.

Sunday was fine, but Monday at work, a sore throat and headache kicked in full-bore, and the next thing you know, I’m curled up in bed at home Tuesday, Wednesday, and Thursday.

The bug had me trying to cough up my toenails for the better part of those three days. And each time I coughed, there was a jet (see photo above) of something other than Eau coming out of my nether regions. Back into incontinence pads I went. And I went through pads like, well, pee through a man without a prostate. Not fun.

To add insult to injury, somewhere in one of those cough-up-your-toenails coughing fits, I must have moved one of my herniated lumbar discs around. (Old injury from 1986.) Now, in addition to jetting pee into my pad with each cough, I simultaneously send a bolt of lightning/pain down my right leg.

Let’s just say it’s not been the best of weeks. (Yeah, I know. Dial 1-800-Waaaahh!)

The cold is slowly relenting, and I’m sure it will be behind me by Thanksgiving. The nerve in my leg? That’s another story…

I’ve been pretty lucky with my back over the years just by being very conscientious of what my limits and capabilities are. About 2005, though, things went bonkers with it.

It would take me 10 minutes to put a sock on my foot and another 10 minutes to put the shoe on, and the only position I was relatively comfortable in was standing. A series of visits to a physical therapist (including traction), did nothing to improve the situation.

I went off to a Harley-Davidson-riding female neurosurgeon to see what could be done. We did all the scans, and she found that a piece of my disc had broken off and was the culprit that was bouncing on the nerve to my leg. She refused to do surgery (risk > reward), but tried using a steroid injected into the spine to dissolve the piece of disc that was floating around. It worked and I haven’t had any serious problem since then.

Historically, when my back does flare up, it tends to resolve itself on its own in a matter of days to a few weeks. This feels a bit different, though. It’s impacting my gait; my right leg lights up when I try to take a normal step, but if I take about two-thirds of a step, there isn’t as much pain.

Moral of the story: Don’t get a flu shot.

Okay. Disregard that. Get your flu shot.

This is the first time I’ve had a reaction to a flu shot like this and, who knows, it may not have been the flu shot at all. It may have been just pure coincidence that I caught the bug around the same time I got the shot. I do work around sick people in a hospital and I take public transit to work, after all. Plenty of opportunity for virus transmission.

Time to pound down a shot of cough medicine and call it a night.

The real moral to the story: Keep plenty of pads on hand. You’ll never know when you’ll need them to tame a jet.

Day 2,841 – A Chat with the Urologist

I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.

This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.

I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.

I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.

I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.

He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.

One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)

That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)

We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.

Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.

All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.

Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.

So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.

Time will tell.

Life After Radical Prostatectomy: 90 Months Later

So it’s been 90 months since my radical prostatectomy. How am I doing?

Status

With a continuously rising PSA, it’s time to face that reality that I have a biochemical recurrence and the cancer is back. Now it’s just a matter of trying to figure out what to do about it. Far easier said than done.

Emotions

Whether consciously or subconsciously, I came to terms with the idea of recurrence a while ago. What I’m really struggling with right now is how I’m going to make the decision as to whether to proceed with salvage radiation therapy now, later, or even at all. I have no idea how I’m going to make that choice and be satisfied that it’s the right one. When I chose surgery and my surgeon after my initial diagnosis, I was completely satisfied with my choice, had no regrets, and never second-guessed it once. I’m lacking that confidence right now.

Incontinence

On the whole, I’m still doing well with incontinence—well into the mid-90% dry range. I have noticed, however, a few more unexpected minor leaks popping up than what I’m used to. That’s concerning, especially if I choose salvage radiation therapy and its potential side effects.

The leaks usually happen when I’m more physically active (especially lifting something heavy), so if I know I have that kind of activity planned in my day, I’ll throw a thin pad in my underwear for good measure.

Sexual Function

It seems that my ability to achieve decent erections has regressed a little, too. I’m probably more in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Of course, if I have salvage radiation therapy, those numbers will likely drop significantly, especially because only one nerve bundle was left behind.

Summary

My first ever visit to a radiation oncologist in May was a defining moment for me. It certainly took its emotional and physical toll from me. I was so mentally and physically exhausted from the research and constant thoughts that I just had to stop and step away. I know I have a major decision ahead of me at some point in the future but, for now, I’m content with not thinking about it at all at the moment.

I know I’ll get snapped back into reality when I go for my next PSA test on 1 August 2018.

Day 2,747 – Side Effects of Salvage Radiation Therapy

During my conversation with the radiation oncologist on Thursday, a big part of the discussion was on the long-term side effects of salvage radiation therapy. He stated that the probability of long-term urinary or rectal side effects was “in the single digits.” That reinforced my own understanding, but after the meeting, it occurred to me that we didn’t talk about the severity of those side effects in any detail.

I fired off an email to him on Friday asking, in essence, of those with long-term urinary and rectal side effects, what percent of those are mild, moderate, or severe?

He replied in a matter of hours and said that he couldn’t respond using the terminology in my email (I gave him definitions of what each of those meant in my own mind). Instead, he referred me to the Common Terminology Criteria for Adverse Events (CTCAE) used in standardizing terminology used in research across the globe. He referred me to “cystitis” and “proctitis” to see their definitions for grades 1 through 5. (Grade 1 was the least impactful; Grade 5 was typically death.)

The doctor also shared side effect data directly pulled from the manuscripts of 3 major randomized trials in post-prostatectomy patients. He didn’t provide the links—just the text—so I used the Google machine to come up with the links/articles. It’s interesting to note that all three are focused more on adjuvant radiation therapy than salvage therapy, but I suppose getting zapped for one is pretty much the same as getting zapped for the other.

 

Bolla et al, Lancet, Vol 366, Aug 2005

Late effects of rectal and bladder grade 3 or higher were only slightly increased in the XRT group vs. the observation group: 4.2% vs. 2.6%.

Wiegel et al, JCO, 2009

There was only one event of grade 3 toxicity (bladder). No grade 4 events were recorded. There were three events (2%) for grade 2 genitourinary adverse effects in the RT arm compared with none in the other arms. In addition, two grade 2 GI adverse effects (1.4%) were seen in the RT arm compared with none in the other arms.

It was interesting to note that the doctor omitted the second half of that paragraph from the original study:

Altogether, the cumulative rate of adverse effects for bladder and rectum (≥ grade 1) was 21.9% in the RT arm and 3.7% in the wait-and-see group (P < .0001; Appendix Fig A2, online only). One urethral stricture occurred in arm A and two occurred in arm B. Incontinence was not assessed, because it is not mentioned in the RTOG/EORTC scoring scheme.

Thompson et al, J Urology, 2009

We conducted a companion quality of life study in 217 men randomized to S8794 with assessments at baseline, 6 weeks, 6 months and annually for 5 years. A strength of this analysis was the inclusion of a 6-week assessment, designed to capture the side effects of radiotherapy at their peak. Tenderness and urgency of bowel movements were significantly more common at the 6-week point (47% vs 5%) in the radiotherapy group but by 2 years there was little difference between the groups. Urinary frequency was more commonly seen in the radiation group but there was no difference in the rate of erectile dysfunction (common in both groups) between groups. Global assessment of quality of life, while initially worse in the adjuvant radiotherapy group, became similar by year 2 and was increasingly superior in the radiotherapy group during the following 3 years. This gradual switch toward a superior quality of life in the adjuvant radiotherapy group should be examined in the context of the increased rates of PSA recurrence, salvage radiotherapy and hormonal therapy in the observation group, all of which have negative impacts on quality of life.

I’ve only skimmed the full studies at the moment, and I’ll come back to them in a day or two. On the surface, however, the numbers have eased my fear of long-term side effects a tad.

Right now, I just need to get away from the topic for a few hours and have some fun. Time to go out and play…

Stay tuned.

Day 2,745 – Conversation with the R.O.

When I was in 7th grade, I had to give a presentation on my science project, an erupting volcano, and I was so anxious about the presentation that I became physically ill and erupted myself. Not pretty. While I didn’t get physically ill today, the feeling was almost the same as I waited to see the radiation oncologist. It’s silly, I know. But it was very real.

In a nutshell, his recommendation was to start salvage radiation therapy.

The R.O. is a Navy captain medical officer, and we spent nearly forty-five minutes going over my case (which I truly appreciated). He took control of the conversation from the outset, explaining the options and consequences of each. I could tell that he had given this little presentation once or twice before. Once we got through that, we did have a real conversation. Some key points:

  • He disagreed with the notion that the increasing PSA is from residual benign prostate tissue left behind.
  • He was confident that the cancer would be in the prostate bed based on my numbers and statistics.
  • He talked about the differing definitions of biochemical recurrence, saying that the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO) use the 0.2 ng/ml threshold, but the National Comprehensive Cancer Network (NCCN) defines recurrence as a detectable PSA with two consecutive increases. My case meets the NCCN definition.
  • Continued surveillance is a viable option for me given my numbers and PSA doubling time.
  • We talked about the short and long-term side effects of radiation therapy: urinary control, sexual function and bowel control. His estimate the probability of long-term quality of life-impacting side effects in any of the three areas to be in the “single digits.”
  • He reminded me of selection bias when talking to other patients or bloggers about their side effect experiences. Yes, their experiences are very real, but for each person in an online forum, there are many others outside the forum who are leading productive, acceptable lives.
  • If we were to do salvage radiation therapy now with my PSA under 0.2 ng/ml, he put the probability of me having no evidence of disease five years from now at seventy-five percent. If we wait until my PSA is above 0.2 ng/ml, that number decreases.
  • Newer scanning technologies weren’t likely to pick up anything at my current PSA levels, yet he was open to the idea of them if it gave me peace of mind.
  • With my numbers, there is no reason to radiate the pelvic lymph nodes or use androgen deprivation therapy (ADT).
  • He was open to waiting until the August PSA results to see what they revealed before making a decision.

It was a good conversation, but I’m sorry to say that I don’t know that there was a lot of new information for me there that would tip the scale either way. The doctor wasn’t pushy in one direction or the other, saying that it was equally reasonable for me to continue surveillance or for me to begin salvage radiation therapy. The choice is mine. About the only thing he was adamant about was not starting ADT, and I’m in perfect agreement with him on that.

I did learn one really interesting thing, however. The reason that the VA Medical Center referred me to Naval Medical Center San Diego has to do with geology. Apparently VA Medical Center San Diego (La Jolla) was built sufficiently close to a geological fault line that they couldn’t build a radiation “bunker” that would be safe in the event of an earthquake.

What’s next for me? A ton of thinking, reflecting, and reevaluating.

Enough for now. I’m spent.

Life After Radical Prostatectomy: 84 Months Later

So it’s been 84 months since my radical prostatectomy. How am I doing?

Status

With my PSA increasing steadily over the last two years to the point where it’s now at 0.10 ng/ml, it appears that I’m on the path to recurrence. Needless to say, that’s not the outcome that I had in mind when I started this journey, but my surgeon did warn that approximately 20% of prostatectomy patients have the cancer return.

Emotions

My visit to the doctor in December went just as I expected it would, with one exception. I left the office feeling as though the wind had been knocked out of me. This whole notion of recurrence took on a whole new meaning when the doctor suggested that we’re going to have to start thinking about radiation in the future. It’s becoming real again. Since then, I’ve been doing okay. Not great. Not horrible. Okay.

Incontinence

I remain “dry” 98% of the time. There have been a few very long days at work where my body tired and, combined with the physical exertion at the end of the day, I was a bit more prone to leak. Rarely do I need to get up to go to the bathroom in the middle of the night—I can last 6-7 hours most nights.

Sexual Function

I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.

I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.

Summary

Recurrence is the fear of every cancer patient because now your options become more limited and the costs of dealing with it—emotional, physical, and financial—begin to increase significantly. It’s time that I start seriously preparing for the trip down this fork in the road. The good news is that I have time with my PSA doubling time as long as it is.