Month 81 – PSA Threshold for Salvage Therapy Survey Results

In last month’s post, I asked readers to complete a short survey to get a better idea of the PSA threshold that would dictate the beginning of salvage therapy. The survey asked:

  • How their medical teams defined “undetectable” PSA levels.
  • How their medical teams defined biochemical recurrence after a prostatectomy (what PSA level).
  • At what PSA level did they and their medical teams decide to begin salvage therapy.
  • How long after PSA biochemical recurrence was it before salvage therapy began.

Before going into the results, I first want to thank those who took the time to participate. You may view the results using the link below:

Salvage Therapy Treatment Survey Results

I could have designed the survey better. I probably should have asked for post-surgery Gleason score and pathology to see if there was a correlation between a higher Gleason score and acting earlier at a lower PSA level. The sample size is small enough where it’s not statistically significant, but there were some interesting observations:

  • The definition of “undetectable” generally ranged from <0.01 to <0.1 ng/ml. I believe that to be a reflection of whether the traditional PSA test or the ultra-sensitive PSA test is being used.
  • The consensus for the definition of biochemical recurrence seemed to be 0.2 ng/ml.
  • The PSA level at which some sort of salvage therapy began was widely spread between 0.17 ng/ml and 3.5 ng/ml.
  • The time to begin salvage therapy after biochemical recurrence varied from one to 35 months.

[Note: I’ll keep the survey open for a while longer and new responses may skew the summary above.]

For me, there aren’t any real “A-ha!” findings that provide clarity, and I expected that going into this exercise. The only thing that’s clear is that each case is unique—from both the patient’s perspective and the medical team’s perspective—and that means that my numbers will be different from your numbers and those will be different from Sam’s numbers and all of us will act (or not) on those numbers differently.

It is nice to know, however, that my medical team is in alignment with others on some of the measures.

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….In addition, a total of 208 articles reported 99 different definitions of biochemical failure among those treated with radiation therapy.” [Emphasis added.]

No wonder there’s confusion among us patients!

For me, the key statement in that paper was, “The Panel acknowledges that the clinical decision to initiate treatment will be dependent on multiple factors including patient and physician interaction rather than a specific prostate specific antigen threshold value.”

It’s up to us.

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.]

Day 2,459 – PSA Results

My silly little trend line that I slapped on my PSA tracking chart wasn’t so silly after all. It was dead on target. My latest PSA: 0.09 ng/ml.

Crap. (Or some other four-letter expletive.)

Even though I expected this (thanks, trend line), I’m still absorbing the significance of yet another increase in my PSA.

In a way, I’m glad to see the results that I have. Certainly not because I want the cancer to come back, but because it removes some of the doubt caused by the yo-yo readings last year. Now I can come to terms with the likelihood that I really am headed down the recurrence path, and I can focus on what’s ahead.

So those are my thoughts in the first 30 minutes since seeing the results online. I’m sure there will be more thoughts to follow. I have to admit that I’m unusually unemotional about this at the moment. That’s good.

I’m sure I’ll have more thoughts to share once this sinks in.

 

 

Day 2,457 – PSA Test Time

Yet another four months have elapsed, and Count Dracula just sucked another vial of blood out of my arm for my latest PSA test. (I shouldn’t disparage the good Count. He’s drawn my blood a couple of times now, and he’s truly the best phlebotomist who’s had the pleasure of poking holes in me.)

Now we let the waiting begin.

Historically, I can get my results online three days after the sample was taken, so we’ll see if that trend continues. (Interestingly, the VA appears to do one data upload a day around midnight Eastern time, so I may know something by late Saturday evening Pacific time.)

Speaking of trends, the nerd in me slapped a trend line onto my PSA tracker chart to see if it can be predictive of where my PSA will land this time around. Of course, in the world of prostate cancer, a Ouija board or a Magic 8-ball can be just as predictive—or more predictive—as my silly trend line.

The trend line prediction: Just slightly above the 0.09 ng/ml mark, indicating a continued increase. If I extrapolate from the last two data points alone, that predicts a PSA of 0.10 ng/ml. Of course, given the yo-yo trend of previous tests, I’m past due for another downward turn. Wagers, anyone???

One final footnote to all of this (biology ahead): To make sure that we have as accurate a reading as possible, I refrained from having an orgasm for a week in advance of the test.

Stay tuned.

PSA with Trend 20170802

Month 80 – PSA Threshold for Salvage Therapy Survey

Okay, please indulge my personal curiosity. This is going to be an interactive post—there’s a pop quiz for some readers.

I’m 22 days and 8 or so hours—give or take—from my next PSA test. (But who’s counting??) And anyone who’s been diagnosed with prostate cancer already knows that there’s a ton of infuriatingly conflicting and confusing information about PSA out there.

Because my own post-surgery PSA has been creeping up in the last two years—meaning some sort of salvage therapy may be in my future—I’d like to ask other prostatectomy patients:

  1. Below what PSA level does your medical team say PSA is “undetectable”?
  2. At what PSA level does your medical team say that biochemical recurrence has occurred?
  3. If you had biochemical recurrence, how long after hitting biochemical recurrence was it before you began salvage therapy?

To make it easier for you to respond, I’ve created a short survey for those who have had a prostatectomy and had their PSA return after surgery. It’s certainly not a scientific survey, but it will be interesting and perhaps educational to see the variance in the responses. If nothing else, it will be entertaining. Click the link below to take the survey:

PSA Threshold for Salvage Therapy Survey

Seriously, having this information available when I get my next PSA results may help me with the next conversation that I have with my medical team, so I thank you in advance for helping me understand what may be next for me.

I’ll share the results in next month’s post which will be shortly after I receive my PSA results from my 2 August 2017 blood draw.


I’ve been blogging for the last 80 months to maintain my own sanity, educate myself and others, and to increase prostate cancer awareness. I certainly don’t do it for recognition. I have to admit, however, that I was surprised to see my blog listed on a Top 50 Prostate Cancer blogs list by Feedspot.

I don’t post this to feed my ego (much), but by clicking on the image below, you’ll see the other websites and resources that are available as well.

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.

Article: Radical revision of treatment for prostate cancer could extend life

Here is a very interesting and perhaps controversial article about shifting how we approach the treatment of prostate cancer:

Radical revision of treatment for prostate cancer could extend life

This isn’t nice … it isn’t “fair” … but it’s true … and it’s important …

I’m not trying to get ahead of myself by posting this, but this article is something everyone should think about.

My mother had a really great outlook on death and dying, and was very open about her feelings (Item #3). I truly believe that her openness did, in fact, make it easier to come to terms with her death. She even created a little to-do list that started, “When I croak…” Seriously.

The hospice team was astonished by the level of openness in our conversations. There was no denial. We talked openly of end-of-life decisions, and my mom even had a hand in writing her own eulogy.

As the author said in Item #1, none of us are getting out of here alive, so planning for the end, especially if you have a disease like cancer, is important and shouldn’t be neglected.

THE "NEW" PROSTATE CANCER INFOLINK

According to an article from Kaiser Health News on the CNN web site today, “People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.” This is notany sort of “new discovery”. However, it is something we commonly choose to avoid thinking about or dealing with.

We aren’t going to repeat all the information in this article. Rather, we encourage our readers to have a close look at this article for themselves. It contains information and facts that we all need to understand and be aware of.

Only a small percentage of all the men who get prostate cancer actually die from this disease, but all men who get diagnosed with prostate cancer live, for at least a short period of time, with the fear that it may kill them, and if they “don’t know…

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Month 79 – Perspectives Gained through a Prostate Cancer Support Group

About a month ago, I joined the Prostate Cancer Support Group on Facebook just to check it out and see what sorts of things were being discussed there. It’s been interesting and educational.

Many of the posts are from those first diagnosed, struggling with the news, seeking some guidance on how to process it and where to begin. Others seek answers to treatment questions. Some just vent. A few offer up a few funny jokes or stories to lighten the mood of the group (and make us test our stress incontinence with hearty chuckles). And then there are, sadly, the one or two at the end of their journey who tell of their decision to stop treatment and just let nature run its course.

More than anything, being in the group reminds you in a very raw, unfiltered way of the physical and emotional toll that this insidious disease wreaks on the patient, his partner, and his family.

Of course, each case is unique to the individual patient, but it’s been interesting to note the differences in information being told by the physicians to the patients. For example—and because it’s of personal interest to me—you can see debates on what the definition of an “undetectable” post-surgery PSA reading is. Because the patients are being given these different numbers by their physicians, it just reinforces my frustration with the lack of consensus in the urology community.

Everyone in the group is very supportive of each other, and that’s good. There’s definitely value in sharing thoughts and experiences and just being able to scream out loud to others who can relate. However, some of the well-intentioned support can go to too far, with some of the comments bordering on misinformation or even medical advice. For the newly diagnosed and not yet educated (about prostate cancer), that can be a concern as they try to wrap their heads around all of this information before making treatment decisions.

I joined the group to see if there were any discussions about post-surgery salvage therapies should my PSA continue to rise, but it seems most of the discussions are with the newly diagnosed or those who are already in the advanced stages of the disease. For now, I’ll keep monitoring the conversations, gleaning what I can (and taking much of it with a grain of salt). If my August PSA shows another increase, I’ll start overtly asking questions and see what sort of responses I get.

Reading the posts of those in the advanced stages of prostate cancer has given me a new respect for what those patients are going through. It’s also made me question how I would want to approach the advancing cancer should it happen to me.

When I read the narratives about the side effects of hormone therapy I, frankly, get scared. So many of the men in the forum (or their wives) speak of how the therapy has had a significant impact on their ability to function. The fatigue, the moodiness, the hot flashes, and more. As I recall, one person spoke of how her husband was sleeping upwards of 20 hours per day.

It’s under those circumstances that I begin to ask myself—and I ask this without judgment of anyone else’s decision—Is it really worth going through all this if you’re going to sleep 18-20 hours a day? Is that really living? Why prolong life if you’re unable to function in your daily tasks? Is the “cure” worse than the actual disease?

I guess that’s just the pragmatic engineer of German ancestry coming out in me. If and when I get to that stage, I may change my tune. “Hell yes, it’s worth it!” But then I stumbled across this poignant article in the New York Times, At His Own Wake, Celebrating Life and the Gift of Deaththat talks about medical assistance in dying, and it reinforced the desire that most of us have to be in control of our own fate for as long as we possibly can.

I hope that I won’t have to make any of these decisions for a very, very long time. In the mean time, I’ll continue to offer support where I can in the group, and learn more about salvage therapy from the experience of others.

Article: Defining biochemical recurrence after radical prostatectomy and timing of early salvage radiotherapy

I came across this interesting abstract of a study in Germany that suggests defining biochemical recurrence after radical prostatectomy at the 0.1 ng/ml level instead of the widely accepted 0.2 ng/ml.

The vast majority of patients with PSA ≥0.1 ng/ml after RP will progress to PSA ≥0.2 ng/ml. Additionally, early administration of SRT at post-RP PSA level <0.2 ng/ml might improve freedom from progression. Consequently, we suggest a PSA threshold of 0.1 ng/ml to define biochemical recurrence after RP.

You can read the full abstract here.

Of course, with my latest PSA at 0.08 ng/ml, that’s far closer to 0.1 than 0.2. I know it’s just one study, so I’m not going to get worked up over it for now. Something else to talk with the doctor about in September (gotta keep ’em on their toes!).