Month 82 – Reviewing PSA Results with Doctor

At this afternoon’s visit to the doctor to review my August PSA results, he asked, “How are you doing?” I replied, “I’m hoping you’re going to tell me.” “With a PSA of 0.09, you’re doing fine.”

I have to admit that I wasn’t quite psychologically prepared for that answer. Nor was I really prepared for the conversation that followed. But before getting into that, the bottom line was just as I expected: Continue to monitor PSA on a four-month cycle, which has me back in the lab in early December.

This was a new doctor that I hadn’t seen before and he was definitely more seasoned than the last one that I had. Still, all those years of experience could have taught him some better communication skills. He talked in broad generalities and in circles—even in response to my direct questions—and that was more than frustrating.

On the topic of recurrence, he didn’t think that I should be so quick to assume that an increasing PSA is indicative of recurrent cancer. He offered up the possibility that it could have been some benign prostate tissue left behind after the surgery and has grown enough where it’s detectable on the PSA test. Or, it could be cancer.

On the topic of PSA tests in general, he reminded me that the really old threshold for biochemical recurrence was 0.4 ng/ml before it was lowered to 0.2 ng/ml. It seemed that he valued the ultra-sensitive PSA test only as it related to the post-surgery pathology. If the pathology was bad, he seemed to put more stock in the ultra-sensitive PSA; but if the pathology was good, he seemed less inclined to put stock in it.

In other words, if you had a 4+3 Gleason score, positive margins, seminal vesicle involvement, or lymph node involvement—or some combination thereof—he would be more likely to consider acting on a 0.09 ng/ml PSA. But it my case with a 3+4 Gleason, negative margins, and no seminal vesicle or lymph involvement, my sense was that his response to my 0.09 PSA was a pretty nonplussed, “Meh.” Or, if my PSA gets to “around 0.13 ng/ml,” we might start exploring treatment options.

On the topic of doing additional testing such as scans to see if there is cancer anywhere, he said that nothing would show up on a scan or MRI with a PSA of 0.09. I want to dig into that some more.

On the topic of salvage treatments, he thought that, given my pathology, the first step would be “a little radiation.” (I’m not sure if sprawling out on the beach for 7 weeks qualifies for “a little radiation,” but it may be worth asking.) He wouldn’t do ADT (hormone therapy) in conjunction with the radiation, again, given my pathology.

Lastly, at one point during the conversation, he quite confidently made the bold prediction that I wouldn’t die from prostate cancer. You think I’d be jumping for joy. I’m not. Perhaps its my experience as a seasoned patient that’s telling me to withhold judgment on that one for the time being.

All in all, this is good news. My lack of enthusiastically embracing it, however, comes from the fact that, rather than eliminating variables to consider, I feel that this meeting introduced a few more, and that just muddied the waters. Emotionally, at this point, I just want this stupid disease to pick a path and stay on it. I may also check with the VA to see if there’s any way I can pick one doctor that I can build a relationship with rather than this new-doctor-a-quarter routine.

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

Day 2,343–A Struggle

I’m surprised by how much getting my PSA results 30 hours ago affected me yesterday and today. It’s been a real struggle.

Anger. That’s the word of the last 24 hours. I just want to scream, “Would you make up your fucking mind already?!?! Either come back and let’s battle this cancer shit head-on, or get the fuck out of my life once and for all!!” (Told you I’m pissed.) It’s the uncertainty that comes with each test result that’s getting to me. And the fact that this will happen every four months for the foreseeable future is growing really tiresome.

Logic tells the data-driven part of me that I’m okay—that I’m still considered to be cancer-free for now. It’s probably because I am so data-driven that I’m getting so angered and frustrated. Cancer doesn’t always follow a logical path; it doesn’t always fit neatly into cells in a spreadsheet. I need be better at accepting that fact. (You would have thought that I would have learned this after 6+ years of dealing with this.)

Cancer sucks.


Sorry if I offended with my language, but when I started this blog, it was intended to be a raw sharing of thoughts and emotions, and it’s something that I needed to do today, otherwise my head would explode. Really.

And, no, I’m not wishing for the cancer to come back. I’m grateful that I’m still here and able to whine about it. Truly. I guess frayed nerves, anger, and frustration are small prices to pay for longevity.

 

 

Month 77–The Results

The results are in. My latest PSA is 0.08 ng/ml, up from 0.06 ng/ml in December. That’s exactly where the trendline on my geeky spreadsheet graph told me it would be, so I’m not entirely surprised. Not pleased, but not surprised.

What does all of this mean? Who knows. On the good news side, I’m still well below the historically accepted 0.2 ng/ml cancer recurrence threshold. But I’m at the point now where I can no longer convince myself that these elevated PSA readings were just a byproduct of the change in PSA test methodology in March 2015. I’m sensing that something real is afoot here, and it doesn’t bode well.

My appointment with the doctor isn’t until 9 May 2017, so I’ll have plenty of time to think about this in advance and have a battery of questions ready for him. We’ll see if we’ll stick to the four-month test cycle or if he wants to increase the frequency. If we stick to the four-month cycle, my trendline would predict the next PSA to be between 0.09 and 0.1 ng/ml.

The last time we met, the doctor wasn’t willing to act until we got closer to the 0.2 ng/ml threshold. I’ll see if this result changes his opinion or if he’s been more accepting of some of the more recent research on prostate cancer recurrence. (You may recall from some of my earlier posts that several studies using the new ultra-sensitive PSA test showed that crossing the 0.03 ng/ml threshold was predictive of cancer recurrence and that intervention with salvage therapies sooner rather than later was more effective.)

I’m not going to pretend that this isn’t troublesome for me, because it is. But I also know that it’s still too early to go into full panic mode. If we stick to the four-month test schedule and August’s results come in at 0.07 or above, that will be one more data point to reinforce the notion that the cancer is, in fact, on its way back. At least in my mind. If it comes in less than that, I’ll be both happy and frustrated because of the continued uncertainty as to what’s really happening.

The journey—with its sometimes insufferable waiting—continues.

 

Day 2,339–PSA Test Time

It’s that time again. Another four months have elapsed and I just had my blood drawn for the next lap on the PSA roller coaster.

Actually, the anxiety leading into this test has been pretty much non-existent. Not that there isn’t any concern; it’s just that I haven’t let it control me. Why get all worked up about something you don’t know the answer to, right?

I should have my results by my next monthly update on 11 April. Stay tuned.

Month 76 – Status Quo

The last month has been a pretty busy month with relatives visiting from out of town and giving them the grand tour of San Diego County. There were also some transitions at work that have left us short-handed until we find a replacement for an employee who moved on to pursue his career elsewhere. Translation: Little time to think about pesky cancer.

But it’s approaching the four-month mark for my next PSA test, so those thoughts will be creeping to the front of my brain soon enough. I’ve scheduled my next PSA blood draw for 6 April 2017.

Till next month (with the latest PSA results in hand, hopefully)…

 

Day 2,241–Doctor’s Visit

My visit to the doctor this afternoon to review my latest PSA results (0.06 ng/ml) went just as I expected it would:

  1. There’s no definitive explanation for the elevated PSA yet.
  2. The elevated PSA seems to be stable, so no need to panic about recurrence.
  3. Retesting in four-month cycles will continue for the foreseeable future.

I’m okay with all of that. I seem to have turned the corner where I’ll always be concerned about my PSA, but I’m not going to let it control my life. It’s too consuming.

He reminded me of how slowly PSA can change and that we shouldn’t even begin to think about any intervention unless the PSA starts creeping up into the 0.15–0.18 range. That’s fine by me. If we get to that point, I’m going to be much more deliberate in selecting what, if any, salvage therapy would be appropriate given where I’m at in life and the potentially debilitating side effects that impact quality of life.

So I’ll call that visit a positive end to 2016. Let’s hope for a happy, healthy 2017!

Day 2,212 – PSA Results

My latest PSA test on 28 November came back at 0.06 ng/ml, up slightly from the 0.05 ng/ml back on 1 August.

That could just be the difference between a new moon and a full moon or simple instrument error. It’s a concern, but certainly nothing to panic over at the moment.

I’m glad to see that I’m consistently hovering in that 0.04–0.08 range, although, if I were to lay a trendline over the data, it would certainly be moving in an upward direction towards that recurrence threshold.

The one nagging thing that hangs over my head is those recent studies that showed PSA at 0.03 ng/ml can be predictive of recurrence. I’ll press the doctor on that again at my appointment on 29 December.

Lastly, I’ve accepted the fact that this will be my new reality: Testing, waiting, and wondering every four months. Not the path I hoped to be on six years out, but it is what it is.

Thanks to everyone for your thoughts, support, and prayers.

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