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.

Month 86 – Struggling

First things, first. I’m struggling to thaw out after spending five days in frigid (-4° F / -20° C) Chicago with my sister and her family this past weekend. You may well be asking, “Who in their right mind flies from San Diego to Chicago in January?!?” Sadly, that would be me.

I contemplated returning for Christmas but had sticker shock on the cost of the airfare, so I opted to return for my birthday last week at a quarter of the cost. This birthday was one of those annoying milestone birthdays—the 30th anniversary of my 30th birthday—and that definitely warranted an appropriate celebration. Of course, anyone in our situation knows that any birthday you’re around to celebrate is a good birthday.

But what I’m really struggling with is this whole notion of recurrence and what to do about it.

I’d like to think that throughout my life I’ve been a generally optimistic, my glass is half full kind of guy, but one with a healthy dose of reality attached to that optimism. Hope for the best, plan for the worst, and recognize the inevitable. I understand the value of a positive attitude, however, I’m increasingly finding that I have a diminishing tolerance of false optimism. “You got this. You’re going to kick cancer’s ass!” Really? Are you sure about that? How do you know? And at what cost? The $109,989.11 invested in my prostatectomy (the real number, mostly paid by the insurance company) doesn’t seem to be paying off.

The costs that I’m talking about aren’t just financial, either. There are emotional and physical costs as well.

With salvage radiation therapy (SRT)—the only option that still has a curative potential—there’s the risk of increased incontinence, loss of sexual function, bowel control issues, and fatigue during the treatments. Chatting with other patients in online forums or through their own blogs, some of these issues don’t manifest themselves until well after the SRT treatments end. And all of this for a 30%-55% chance of having no evidence of disease five or six years after SRT ends.

With androgen deprivation therapy (ADT) (hormone therapy), there’s the loss of libido and sexual function, mood swings impacting relationships, hot flashes, loss of muscle mass, increased risk of osteoporosis, and significant depression. Of course, ADT is not curative, so you get to suffer through those substantial side effects for a longer period because ADT prolongs your life.

It’s easy to get excited when you see your PSA plummet after starting ADT, as it impacts those androgen-dependent cancer cells. But guess what? There are also androgen-independent cells floating around that the ADT won’t impact at all, and it’s those cells that will start driving the PSA back up again and that will ultimately kick your ass.

Being a data-driven numbers guy, I’m also struggling with how to quantify these potential impacts on quality of life.

When you’re in an online or even in-person support group, you have to remember that there’s a self-selection bias taking place that will skew your perspective to the bad. Think about it. Almost everyone who’s in the group is there because they’re at some stage of dealing with this disease and having issues that need answers. Who you don’t see are those patients who are outside of the group who have success stories in dealing with their cancer and have simply stepped away from that chapter of their life.

For me, I want to know the ratio of who’s in the group versus those who are outside the group. Is it like an iceberg with 10% of the patients in the group being the visible ones and 90% of the success stories out of sight? Is it 50-50? 30-70? 60-40? Knowing the answer to that helps me understand the risks better.

I’ve stumbled across a few studies that talk about the likelihood of potential side effects from SRT but I would like to see more. The risks do seem to be relatively low from what I recall and from what my doctor is telling me, but forgive me if I’m skittish about accepting even low risk given where I’m at. (My surgeon forewarned me that there was a 20% chance the cancer would return; I guess I’m just not feeling all that lucky at the moment given my track record.)

Similarly, with ADT, it seems that most everyone suffers some form of side effects, but each person is impacted differently. Again, the numbers guy in me would love to see some sort of study that says, “While on ADT, my quality of life has been reduced by __% in each of the following areas…” I’ve heard patients say that they are “just a shell of the person I was once” or that the ADT has them remaining in bed 20 hours a day. Of course, there are others who seem to have only mild side effects with negligible impact on their daily lives. What’s the distribution like between those two extremes? Knowing the answer to that would be very helpful in decision making.

Given all that, I’m struggling with one more thing, and it may scare or even offend some readers.

“You’ve got plenty to live for. You need to fight. You need to be strong. You need to be a warrior and defeat this disease,”—all things that I’ve heard along the way. There’s this pervasive attitude that other patients, family members, and the healthcare system have that we must do everything we can to go on living for as long as we can at all costs.

Why?

Please don’t panic and think that I’m ready to check out tomorrow. I’m not. There is plenty to live for, and that is precisely why I ask the question.

Is being a shell of yourself and staying in bed 20 hours a day really living, or is it merely existing? Would you rather live a more full, active life for 8-10 years, or merely exist for 20 years?

What about the impact on your significant other and those closest to you? Yes, they’ll be by your side every step of the way. Do you think they would rather remember your last years as being present and engaged for 8-10 years, or withdrawn, moody, depressed, and barely capable of functioning for 20 years?

What about the financial impact on your family? Would you rather take a few bucket list trips with your significant other and family in your remaining 8-10 years, or would you rather take out a second mortgage on your home to pay for the drugs and latest technology tests that will keep you existing for 20 years, placing a financial burden on those who survive you?

Before you send me all sorts of hate mail, I know those are extreme examples and that there are many shades of gray between the extremes, but, in the absence of studies or data that mitigate those examples, that’s what’s rattling around inside my analytical, pragmatic mind at the moment—right or wrong. It’s just the way I’m wired. The good news is that I have time to find those studies and data that hopefully will give me the information I feel I need to make decisions going forward.

It takes strength to go through the radiation, ADT, and chemotherapy if that’s the path that you choose. It also, however, takes strength to say, “No. I’d rather live without those debilitating side effects for as long as I can, even if it means it will be for a shorter period of time.”

Thirteen years ago, my mother was diagnosed with mesothelioma, the incurable cancer associated with asbestos exposure. She was given the option to participate in some clinical trials that may have extended her life three to twelve months, but she refused. “I don’t want to be someone’s pin cushion when the end result will be the same.” She wanted to retain control over her life for as long as she could, and she did so to the best of her ability. Sadly, though, it was only a matter of months before she died, but she went out on her own terms.

That’s how you kick cancer’s ass.

I would like to think that I’ll be able to do the same.


Just a note. Because I knew I would be traveling, I wrote this post over a week ago. While I was in Chicago, a fellow prostate cancer patient, Mark Bradford, replied to a question in an online support group, and it’s complementary to the topic of this post. The question posed was, “At what point do you get tired of fighting?” He replied:

I dislike framing this as a fight. You have a disease, and you seek treatment for [it] till you decide to stop. Being in treatment is not fighting and stopping treatment is not giving up. I was inoperable from the beginning and stage 4 soon after. My outcome was certain, so my priority was quality of life over quantity. I did HT [hormone therapy] until it stopped working, and cannabis oil throughout. I refused chemo as it would not cure me or significantly extend my life. Don’t let anyone say you’re giving up if you decide it’s time to stop treatment. I could not afford alternatives, so my choices were limited. If you have the means, do whatever seems right to you. But accepting reality is not giving up.

I don’t think that I could agree more with Mark’s comment about framing this as a fight and about being in treatment or stopping treatment.

Mark is nearing the end of his life, and you can read his very poignant blog, God’s 2 by 4: Mark Bradford’s Cancer Journal.

Another patient, Dan Cole, answered simply and succinctly: “Live the life you choose to live. That is winning the fight.”

I know I’m getting way ahead of where I should be given my current status but, if nothing else, this disease certainly causes you to prematurely contemplate your own mortality.

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.

Day 2,460 – The Day After

It’s Saturday morning, I’m up, and the birds are chirping outside the window. All good things.

The other good thing is that, for now, I’m remarkably at peace with last night’s PSA results. There’s no anger. No sadness. No real fear. That’s a good thing, too. Wasting emotional energy won’t do anything to change the result.

Another good thing is that it’s taken two years for my PSA to get to this point, and it may take another two years before it hits the traditional 0.2 ng/ml recurrence threshold. That’s time, and time is a good thing.

So what’s next?

My appointment with my doctor isn’t until 12 September and we’ll have a lengthy discussion then. I’m okay with the delay; it allows me time to put together my questions and concerns.

One of the concerns that I will raise yet again is the PSA level at which recurrence is defined. For years, the 0.2 ng/ml threshold has been the accepted standard. However, based on more recent studies, it’s becoming increasingly accepted in the prostate cancer world that salvage treatment should start much earlier.

Studies out of UCLA and Johns Hopkins suggested that a PSA of 0.03 ng/ml using the ultrasensitive PSA test can be predictive of recurrence. In that case, I’m about 18-24 months behind the 8-ball. Another study out of Germany released in May 2017 suggested recurrence be defined at 0.1 ng/ml, which I’m just shy of (time for one more Maß of beer at Oktoberfest!). And just to prove that I’m not nuts obsessing over the definition of biochemical recurrence, a somewhat dated research paper (2007) showed “a total of 145 articles contained 53 different definitions of biochemical recurrence for those treated with radical prostatectomy.” [Emphasis added.] No wonder there’s confusion among us patients!

You can see why, then, it’s so confusing and frustrating when recurrence is being defined by different groups as anywhere between 0.03 ng/ml and 0.2 ng/ml and your numbers are smack-dab in the middle of that range. Either my cancer is back or it’s not. It just depends on who you ask.

For my own sanity at this point, it’s just easier for me to accept the idea that the cancer is back, period. I can’t keep going on the emotional roller coaster ride of “Is it or isn’t it?” Given two years’ worth of upward-trending data points when there shouldn’t be any PSA at all, it’s a fairly safe bet that the cancer is back. I genuinely don’t think I’m getting ahead of myself and, if I’m proven wrong at some point in the future, I’ll eat my words and we’ll have one hell of a party. (Oktoberfest, anyone?)

Treatment options for me include salvage radiation therapy (SRT), androgen deprivation therapy (ADT) (hormone therapy), a combination of both and, perhaps chemotherapy. There are also newer options out there that I need to get more familiar with. Of course, there’s always the option to do nothing, too (it’s not as crazy as you think).

Salvage Radiation Therapy

Radiation therapy usually targets the prostatic bed—where the prostate used to be—on the assumption that that’s where the residual cancer cells are hanging out. But the insidious thing about prostate cancer is that microscopic cells could be anywhere in the body and never get picked up by any scans or imaging. You can blast the crap out of your prostatic bed—risking increased incontinence, complete impotence, and bowel control issues—but not get all the cancer. In fact, one study shows that only 38% of SRT patients are disease-free at five years after their radiation therapy. Other studies put the number at around 50%. SRT can be curative, however, in those patients where it worked.

I’ve also seen conflicting guidance about SRT. On the one hand, “men with Gleason scores of 7 or lower, no cancer found in their seminal vesicles and lymph nodes, and increases in PSA several years after surgery were more likely to have a local recurrence of cancer—which means their cancer may still be cured with external-beam radiation to the prostate bed, where some residual cancer cells may be hiding.” (Walsh, 2nd ed. 381) I fit all of those requirements and would be a candidate for SRT.

On the very next page in Walsh, however, it states, “Radiation was also not likely to help men who had negative surgical margins. This is logical…because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside the prostatic bed, as opposed to those whose margins were positive at surgery, where disease is likely to remain in the area (and thus can be treated with radiation).” I had negative margins. The one thing that troubles me in that passage is the word “persists” because it implies the patients’ PSAs never went to undetectable after the surgery like mine did. That may make a difference in applicability.

Then there’s this little tidbit of information from the New Prostate Cancer Infolink: “There is an open controversy as to whether salvage radiation therapy, even if given after biochemical recurrence (a confirmed PSA ≥ 0.2 ng/ml), translates to a survival benefit. Fewer than a third of patients with a post-prostatectomy biochemical recurrence experienced systemic progression, and it takes a median of 8 years for distant metastatic progression, and 13 years for mortality to occur, according to a Johns Hopkins study (by Pound et al.).”

Androgen Deprivation (Hormone) Therapy

Prostate cancer feeds off of testosterone, and androgen deprivation therapy is a means of starving the cancer cells of testosterone. It’s the equivalent of chemical castration. There are two types of ADT: one stops the production of testosterone and the other stops the cancer cells from absorbing the testosterone. But here’s the kicker: there are androgen-independent cancer cells out there that will not be affected at all by either therapy, and they’ll just keep growing. ADT is not a cure; it only prolongs life.

ADT has some nasty side effects: depression, fatigue, hot flashes, anxiety, increased risk for other diseases (diabetes, cardiac issues), weight gain, osteoporosis, loss of libido, irritability, and others. Some of these side effects are so debilitating in some patients that they can no longer work and have difficulty functioning in their daily lives. (Yes, that’s a worse case scenario, but from my anecdotal observations of ADT patients online, side effects do have a significant impact on many of them.)

Another option to eliminate the majority of testosterone production is through surgical castration (gulp!). That may reduce some of the side effects, but not all.

Lastly, there’s debate as to when to start ADT and how to administer it. Some argue that you should start early to slow the growth; others argue that you wait until the end so that it can be helpful in tumor and pain management; yet others argue between whether it should be administered continuously or intermittently. Interestingly, studies have shown there is no statistical difference in outcome whether you start ADT early or late—the result is the same. (Walsh, 2nd ed. 473, 476-477) The only difference is that, if you start early, you suffer from the side effects for a much longer period.

Doing Nothing

Of course, the last option of doing nothing has some merit, too.

I’m not keen on being radiated, especially if we don’t know without a high degree of certainty that the cancer is still in the prostatic bed. I mean, really, if I’m going to risk peeing and pooping in my pants and never having an erection again for the rest of my life (perhaps slightly exaggerated) for just a 38% chance that I’ll be cured… That requires some thought.

The same thing with starting ADT early. If you’re going to be depressed, curled up in a bed 20 hours a day, unable to work or function just so you can extend your life for a few months or years, and the outcome is going to be the same as if you started ADT late, is that really worth it? Is that living?

None of us are getting out of here alive, and doing nothing isn’t “giving up.” In fact, when the side effects of the treatment may be worse than the disease itself, I view doing nothing as a way to say, “F–k cancer!” If I can squeeze a whole lot of living into the next 10-15 years without side effects of treatment impacting my quality of life and preventing me from truly living, why wouldn’t I do that? Sure, it’s a crappy hand that I’ve been dealt, but I’ll just come to terms with it and play it out. Again, none of us are getting out of here alive, and the notion of extending life at all costs just for the sake of extending life doesn’t sit well with me. Quality over quantity is important to me, and I’m sure there’s a balance in there somewhere.

A study done in 2005 at Johns Hopkins looked at various factors—Gleason score, PSA doubling time, and time from surgery to the return of PSA—and determined the likelihood that you will not die from prostate cancer based on those measures. Based on my numbers (Gleason 7, PSA DT more than 10 months, and return of PSA more than 3 years after surgery), I have a 99% chance of being around in 5 years; a 95% chance of being around in 10 years; and an 86% of being around in 15 years. (Walsh, 2nd ed., 386-390) Again, what’s not clear from that summary is what, if any, treatments patients had during that time. Bottom line: I’m not going anywhere anytime soon.

Have I come to a decision? Of course not. It’s far too early and there are far too many conversations that need to be had with medical teams, and much more research to do. It will also be interesting to see if we stick to the four-month PSA test cycle or increase the frequency now. Based on my last conversations with the VA doctor, I suspect that we’ll keep to the four month cycle and consider acting once the PSA hits the 0.15 mark or so. (They’re pretty tied to the 0.2 ng/ml number.)

The one thing I want to understand much better is what percent of patients are impacted by the treatment side effects and to what degree. I’ve already got a decent idea—the numbers are relatively small—but I need to zero in on that in my research.

One last bit of good news. Advances are being made in prostate cancer research every day, and perhaps there’s something in the pipeline that will be of use in the near future.

At least now you have a better idea of what’s ahead and how my pea-sized brain is processing all of this at the moment.

It’s now well into the evening here in San Diego (took a break in the middle of the day) and time to figure out where those chirping birds went to escape the heat. That, or plan a trip to Oktoberfest.

[I hope I didn’t offend or scare anyone.  I also respect each and every person’s decision for their own treatment options because what they chose is right for them and their personal circumstances.]

Life After Radical Prostatectomy: 72 Months Later

So it’s been 72 months since my radical prostatectomy. How am I doing?

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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

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