Life After Radical Prostatectomy: 9 Years Later

So it’s been 9 years since my radical prostatectomy on 4 January 2011. How am I doing?

Status

If you’ve been following along, you know that my PSA has taken a bit of a roller coaster ride over the last few test results, with the trend continuing upward with the last reading at 0.16 ng/ml. I’ve got my next blood draw on the calendar on 4 February 2020 and we’ll just have to see what happens next.

Emotions

Faithful readers of this blog will have noticed that I skipped my regularly scheduled post in December. Part of the reason behind that was I was insanely busy at work, trying to get almost 300 volunteers to staff five events in less than two weeks, and part of it was that I had been pretty successful putting this cancer crap on the back burner for a while, and it felt good.

I don’t necessarily subscribe to the “ignorance is bliss” theory of life, but I think that I’ve been on a subconscious break for a while knowing that the next PSA test will very likely force my hand—enjoying the calm before the storm, so to speak.

Incontinence/Urinary Control

I’ve been pretty much maintaining the status quo in this department for a while now: minor stress incontinence that’s more a nuisance than anything else. Although, when I was down with the flu in November, I was going through three or four pads a day with the severe coughing that I had. It wasn’t fun. (Always good to have a supply of pads in the cupboard.)

There were also a few nights in November and December where I had to empty my bladder 3-5 times in 6 or 7 hours of trying to sleep. Not fun and made for a tough day afterwards. I’m not sure what that was about, as I didn’t increase my fluid intake above normal any of those nights. Thankfully, I’m back to normal and can pretty much sleep through the whole night without needing to run to the toilet.

Sexual Function

The last time I wrote one of these updates, I said that I had been regressing a little in this department, with erections in the 60%-70% range. Things have seemed to improve a little on their own since then, and I’m probably back in the 70%-80% range, with an occasional 90% day.

Summary

I’ll continue to enjoy the calm before the storm for now and we’ll see what happens to my PSA in early February. If it goes up again, referrals to radiation oncologists and lots of imaging will likely be in my future. If it stays the same or decreases again, who knows what path I’ll choose. No need to get ahead of myself right now. We’ll get the results, talk to the medical team, and go from there.

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.

Life After Radical Prostatectomy: 8.5 Years Later

So it’s been 8.5 years since my radical prostatectomy on 4 January 2011. How am I doing?

Status

My PSA dropped from 0.13 ng/ml to 0.10 ng/ml at the last test back in March, which was quite the pleasant surprise. That’s more in line with three tests prior to the 0.13 test, so perhaps the 0.13 was the anomaly. In any case, we agreed to test in six months instead of the four month cycle that I had been on, and I’m okay with that. Two extra months of not worrying about PSA is a good thing.

Emotions

There isn’t a day that goes by where cancer doesn’t pop into my mind at least tangentially. The good news is that with such a slow upward trend in my PSA (PSA Doubling Time of 155 months or so), I’ve been able to shift my thinking to managing this more as a chronic illness than something to panic over. That’s been emotionally liberating. Of course, I may be playing with fire and my test in October will snap me out of that mindset.

Incontinence/Urinary Control

There really hasn’t been much change in this area. Still the occasional stress incontinence squirt and the post-pee dribble if I don’t go through my routine to drain my urethra. I’ll stick a pad in my underwear if I know I’m going to be more physically active, as that tends to cause a few leaks as well. On the whole, it’s more a nuisance than a real quality of life problem.

One of the good things is that I rarely have to get up in the middle of the night to empty my bladder, which means that I can sleep through the night. Mind you, though, that I need to get better at getting more than 6-7 hours of sleep per night, and that may change the equation a little.

There are times during the day, though, where I can have a sudden need to urinate right now, even though my bladder is far from its capacity. It’s an occasional thing, fortunately, and I’ve always been able to make it to a toilet in time.

Sexual Function

This is one area where I seem to be regressing a little. Erections aren’t as strong as they used to be; now they’re in the 60%-75% range. Again, that’s without chemical assistance. I may talk with the doctor about this the next visit.

Summary

My shift in thinking of this as more of a chronic illness has really been helpful. The stress and worry aren’t nearly at the levels that they once were, so that’s good. But that lasts only until the next PSA test, and then we take the latest factoid and go from there.

Life After Radical Prostatectomy: 96 Months Later

So it’s been 96 months since my radical prostatectomy on 4 January 2011. How am I doing?

Status

My PSA resumed its upward climb last month after a brief hiatus between April and August. It certainly wasn’t unexpected, yet I was holding out hope that I could have had three consecutive PSA readings at the same level. It just wasn’t meant to be. That means that I’m one step closer to having to make a decision about what’s next.

Emotions

At this point, I’m at peace with where I’m at regarding the cancer returning. What’s actually been gnawing at me since my last post like this six months ago is something completely different—relationships.

Relationships require effort and commitment by both parties and lately, I’ve been asking myself the question, “At what point does one stop investing in a relationship when you get little or no return?” I don’t know that I have the answer to that question. I don’t want to burn bridges, but time is the most precious thing we as cancer patients have, and we want to invest our time as wisely as possible.

The sad thing is that I’m beginning to ask that question of the people who are the ones that I’ll  need to turn when the cancer advances to the point where I’ll need assistance. (Remember, I’m single and the thought of facing this alone scares the piss out of me.)

Incontinence

Speaking of piss out of me, let’s talk incontinence. (Sorry, I couldn’t resist.) I have noticed a slight increase in stress incontinence episodes and, if I’m perfectly honest with myself, I would attribute that to the fact that I have gained weight again. I really think there’s a correlation there, so I’m going to work on losing some weight and see what happens.

I’m still 90+% dry, but when I sneeze, cough, or lift something of even moderate weight, the likelihood of a few drops leaking out has gone up slightly.

The other time that I have issues is immediately after emptying my bladder. (I don’t know why I haven’t talked about this before, but it’s been an issue for quite a while.) If I don’t go through a little routine at the urinal to “milk” any residual urine from my urethra after emptying my bladder, the chances are good that I may have a squirt of urine as I’m putting everything away.

Sexual Function

My ability to achieve decent erections has remained pretty constant through the last six months. I’m in the 70%-85% range now. Good enough to achieve an orgasm, but questionable for much more than that. Some days I can get lucky and get in the 90% erection stage, but those days aren’t common. Of course, all of that is without any chemical assistance.

Summary

I’ve got a lot on my plate in the months ahead. I’ll continue to research imaging trials and salvage radiation in anticipation of my next PSA test in April. I’ll also evaluate my relationships, looking inward first to see how much of this may be my problem, to see where I should invest my precious time. I have no doubt that 2019 will prove to be an interesting year.

Life After Radical Prostatectomy: 60 Months Later

Moonrise over Algondones Dunes near Brawley, California
Moonrise over Algodones Dunes near Brawley, California

So it’s been 60 months since my radical prostatectomy. How am I doing?

That’s a little more challenging to answer with this update, as there’s been some change since my last six month update.

Status

For four years, my PSA had remained undetectable, but in September, not long after my 54-month update, my PSA moved from undetectable (<0.03 ng/ml) to 0.05 ng/ml. Not a huge number and not close to the biochemical recurrence definition of 0.2 ng/ml, but concerning enough to both me and my urologist that we did a follow-up PSA test in December. Those results came in at 0.04 ng/ml. The urologist said there was no need to panic, but was also concerned enough to put me back onto a four month testing cycle again. This could likely go on for years.

Emotions

That unexpected movement in my PSA sent me on an emotional ride rivaling any looping theme park roller coaster, at least initially. As we get into the test, wait, test again, wait some more mode, I have to be wary of letting myself get trapped in a state of suspended animation. Between the initial test results in September and the follow-up test in December, I placed my life on hold for those three months. I can’t do that. I have to live between each test going forward, knowing that perhaps someday the reality will be that the cancer is back.

Incontinence

I continued with my weight loss program (75 lbs. / 34 kg), and that has certainly helped with my incontinence. But then I caught a cold in October that just wouldn’t relent, and during most of that time, I found myself back in pads as insurance when I coughed, sneezed, or blew my nose hard.

Since then, I’ve noticed there have been a few days where I may be more tired, and I may be prone to some very slow seepage that has been a little disconcerting.

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.

Support Group

You would have thought that I might have sought out help in the form of a support group earlier than five years into this journey, but I didn’t until now. I joined the Gay Men’s Prostate Cancer Support Group here, mainly to see if anyone had any insights into the social aspects of trying to date after a prostatectomy. I’ve only been to two meetings so far and it has been beneficial to hear what others continue to go through. I’ll keep at it for a while longer and be there to share my own experience with a couple of the newly diagnosed members.

Summary

Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with an increased PSA over two readings three months apart, I have to admit that I am a bit more concerned about the notion of recurrence.

Five Years

It was five years ago today that my biopsy results were delivered: It’s prostate cancer.

Five years later, I’m back in the waiting-and-wondering mode as I wait as patiently as I can for my next PSA test to see if my September PSA reading of 0.05 ng/ml was a fluke (readings for the previous four years always came back undetectable), or if it’s the beginning of an upward trend and a trip to recurrence.

I plan to have my blood drawn on 2 December and should be able to get my results online 3-5 business days later. My appointment with my urologist is on 15 December.

On the whole, I’ve been doing pretty well emotionally. I’ve put this onto the back burner for now, but I’m finding that, as I get closer to the blood draw (it’s just three weeks away), I’m becoming a tad more moody. There are days where I’m doing quite well, and there are days where I simply think, “I really don’t want to go through this again.”  In the interim, I have been reading about recurrence and treatment options to get myself a little smarter about it all. With luck, I won’t have to put that research to use.

Let’s keep our fingers crossed…


On the general health front, I spent a good chunk of October fighting a cold. It went on for over 4 weeks and just wouldn’t relent. (Some coworkers suffered the same fate, and my doctor confirmed that it was just a cold–no pneumonia or bronchitis–and I just had to ride it out.)

With all of the coughing, I returned to my incontinence pads as insurance, and they were definitely needed some days. I will say, however, I’ve continued my weight loss program, and being 67 lbs. /30 kg lighter, has really helped decrease the severity of the stress incontinence.  It would have been far worse had I had this cold a year ago.


I attended my first prostate cancer support group last night at the San Diego LGBT Center. It’s something I’ve been meaning to do since September, but life kept throwing me curve balls. Even five years into this adventure, there definitely was value in hearing perspectives of other guys. I’m glad I attended.


Finally, you would have thought that after five years of blogging, I’d be better connected in the blogging community. Let’s just say that I’m apparently a slow learner and it’s only been in the last few months that I’ve discovered how to open doors to other bloggers.

A few weeks ago, I came across Mansacked: A Blog About Prostate Cancer written by a gentleman five months into his experience with prostate cancer.  He, too, has been very open in his discussion which, to me, is very important. Check it out.

 

Month 59 – Resigned

It’s been an interesting month, that’s for sure.

The emotional roller coaster ride of learning that my PSA moved upward has come to an end for now. In fact, I’ve pretty much resigned myself to the fact that it is what it is, and there’s little that I can do about it other than wait.

Have I resigned myself to the idea that the cancer is coming back? I don’t know. Perhaps. I certainly don’t want it to come back, but I’m coming to terms with the fact that it’s within the realm of possibility in a way that it hadn’t been before the increase in PSA. If I’ve resigned myself to anything, it’s that I’ll have plenty of PSA tests going forward, along with the associated anxiety that comes with each.

I remember my surgeon telling me there’s an 80% chance that I’ll be cancer-free at 10 years, so that means that there’s a 20% chance that it will be back. For some reason, my gut instincts are telling me that I’ll be in that 20%. I don’t know why. Perhaps it goes back to my first solo trip abroad.

I was flying from the United States to Japan as a midshipman going on my summer training cruise, and I was flying on a military charter that landed at Yokota Air Force Base. On arrival, they told us that 20% of us had been selected at random to go through a thorough customs inspection. I was one of the 20%. They dumped my duffle bag’s entire contents onto a nice stainless steel table, went through everything, and told me to repack it in less than 5 minutes. Just my luck.

I know. A silly comparison. Still, it’s how my luck runs sometimes. December will be an indicator as to whether that rule will apply or not.


I’ve been battling an early season cold for about two weeks now, and it just doesn’t seem to want to let go. The stress incontinence was remarkably good during the first week, but when the cold moved into my chest the second week, I went back into pads for protection as I coughed and coughed.

Perhaps the stress of the PSA results weakened my system a tad, but most likely, it’s just that I work in a museum where lots and lots of people–especially kids–come through.  Oh well.

DJTPC

Life After Radical Prostatectomy: 54 Months Later

So it’s been four and a half years since my radical prostatectomy.  How am I doing?  (Remember, what follows is a graphic description, so proceed only if you want to read…)
Continue reading “Life After Radical Prostatectomy: 54 Months Later”

Month 55 – Sick of Being Sick

I hate getting sick.

The week before Memorial Day weekend, I came down with a nasty end-of-spring head cold that kept me home from work a couple of days.  It also put me back into incontinence pads.

Heavy coughing certainly increased the likelihood that I would have stress incontinence episodes, so I started wearing pads as insurance.  I’m glad that I did, because several times they were definitely needed.  I will admit, however, that I did better than I expected in many cases, and I attribute that to my recent weight loss.

The one thing that I’ve had difficulty controlling is stress incontinence while I’m standing.  If I’m standing or walking when I sneeze or cough, there’s a much greater likelihood of leakage, no matter how hard I try to control my pelvic floor muscles.  That’s where the pads came in really handy.

The unfortunate thing with this head cold is that, even though the worst of it lasted only a couple of days, the nagging cough lingered for a good week and a half after.  Ugh.

The moral of this story: Keep pads on hand for those unexpected times when you may need them.

This recent Prostate Cancer Foundation article, Excess Weight Linked to Worse Prostate Cancer Diagnosis, reinforces my will to keep losing weight.  Sure, it may be a case of me closing the barn door after the horses have escaped, but getting to a healthy weight can only be a good thing in the long run for a whole host of reasons.

 

 

Life After Radical Prostatectomy: 48 Months Later

So it’s been four years since my radical prostatectomy.  How am I doing?

Continue reading “Life After Radical Prostatectomy: 48 Months Later”