Here’s the third and final part of Dr. Kwon’s talk. As with the others, it’s very educational about advanced disease (at least it was for me).
Category: Life After Prostatectomy
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.
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: 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.
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.
Life After Prostatectomy: 78 Months Later
So it’s been 78 months since my radical prostatectomy. How am I doing?
Apparently, forgetful. I just noticed that I didn’t do an update at the 72 month mark. Oh well.
Status
Regular readers of this blog already know that my PSA has been bouncing around like a yo-yo in the year since my last update, with the most recent reading in April 2017 coming in at 0.08 ng/ml—a tie for the highest post-surgery PSA reading. I’m set up to go for my next PSA test the first week of August.
Emotions
When the PSA crept back up in April, my frustration and anger did more than creep—they skyrocketed. I just wanted this stupid cancer to make up its mind and to quit jerking me around. Either come back or go away. (My preference, of course, is for the latter and not the former.)
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
It’s certainly been a roller coaster ride with my PSA doing what it has been, and I’m really not trying to get too far ahead of myself at the moment. In the grand scheme of things, my numbers are low and I’m far better off than many other prostate cancer patients. Still, being the researcher and planner that I am, I have been focusing more on salvage therapies, side effects, and decisions about quality of life versus quantity of life.
Life After Radical Prostatectomy: 72 Months Later
So it’s been 72 months since my radical prostatectomy. How am I doing?
Graphic Biology Ahead
Status
Since my 66-month update in July, we learned that my PSA continued to play yo-yo by dropping from 0.08 ng/ml in April to 0.05 in August and 0.06 in November. So I’m still hovering well below the 0.2 ng/ml widely accepted recurrence threshold. That’s good.
Emotions
The emotional roller coaster that I was on at the beginning of my elevated PSA trip has really subsided into the kiddie version of the ride. Sure, there are things to be concerned about, but the initial panic and fear over the possibility of recurrence are gone.
Incontinence
My weight loss of 100 lbs. / 45 kg at its best point certainly helped reducing my incontinence. (I’ve sadly put about 8 lbs. / 3.6 kg back on thanks to the stress of our stupid election and the holiday feasts at Thanksgiving and Christmas).
What I find is that when I’m physically active or when my body is tired is when I’m more inclined to have small episodes of incontinence. At the beginning of December, we had an event at work where I was on my feet for 12 hours and doing a lot of lifting at the end of the day cleaning up after the event. By the end of the night, my underwear were damp from seepage that I never really felt as it was happening. (I generally don’t wear pads because 99% of the time, I’m dry.)
Knowing that I already have some incontinence when active is a concern if we ever get to the point of salvage radiation therapy, as SRT tends to worsen incontinence.
Sexual Function
Really not much has changed in the sexual function department in the last year or so. With only one nerve bundle, I’m pretty pleased with the fact that I can achieve a decent erection 80-90% of the time, but it does require some effort. (And I’m not taking any ED drugs like Cialis or Viagra.)
Earlier I talked about penile shrinkage after the surgery, and I’m happy to say that things are back to where they were before the surgery. I’m not sure if that’s the norm, but I’ll take it (even though it took years to get back here).
Summary
As I was wheeled into the operating room six years ago today, I had to have a little fun with the surgical team. I stopped them and said, “I just need to know one thing before you start.” “What’s that?” my surgeon replied. “Are all of you over your New Year’s hangovers?” When they laughed and said, “Yes,” I said, “Good. Let’s do this.”
Here I am, six years out from the surgery, still kicking and getting along fine for the most part. Sure, this elevated PSA is a concern, but I’m not going to live my life from PSA test to PSA test. It’s just too draining to do that. As I said at the beginning of this journey, I’ll just do my best to take things one test result at a time and go from there.
I’ll continue to stay plugged into the prostate cancer community to keep abreast of the latest research so that, if and when my elevated PSA ever becomes more than a nuisance, I’m educated and ready to make decisions that are right for me and my desire for quality of life.
Life After Radical Prostatectomy: 66 Months Later
So it’s been 66 months since my radical prostatectomy. How am I doing?
Honestly? Scared. Afraid of the cancer coming back.
Status
Since my 60-month update in January, we learned that my PSA doubled from what it was in December 2015: 0.04 ng/ml to now 0.08 ng/ml in April 2016. That’s still below the recurrence threshold of 0.2 ng/ml, but obviously moving in the wrong direction. In four weeks, I’ll go for another PSA test and we’ll just have to wait and see what happens with it.
Emotions
Yep. There’s been plenty of emotions in the last six months.
When I saw the PSA at 0.08 in early April, it was as though I was knocked off a horse, fell to the ground, and had the wind completely knocked out of me. Dazed, confused, and not even sure that I wanted to try and get up. It took until early June before my emotional response subsided and I got back into a more normal mindset.
Incontinence
I continued with my weight loss program (90 lbs. / 40.8 kg), and that has certainly helped with my incontinence. Very rarely do I have any leakage at this point.
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
Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with elevated and apparently increasing PSA readings over the last 10 months, what’s in my future is uncertain. (With the exception of two certainties: 1) An unending series of PSA tests ahead and 2) the thought of cancer ever-present in my mind.)
Life After Radical Prostatectomy: 60 Months Later
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.
Dan's Journey through Prostate Cancer 