Day 1,769 – Getting Prepared

It’s the day before my meeting with my urologist, and I’ve been scribbling down the questions that I’m going to ask tomorrow. The Boy Scout in me  is coming out: Be Prepared.

Emotionally, it’s been one of my better days in the last few days. Yesterday, I was mad as hell in the morning and sad by sunset.

One of the infuriating things about this whole adventure is that there’s just sooo much information that’s out there, and there are so many different approaches to the same issue, that it makes it extraordinarily difficult to sift through it all and make sense of what I should do next. Then, of course, there’s the inherent bias introduced by perspective. Talk to a urologist, get one opinion; talk to an oncologist, get another; talk to a surgeon, get a third. While they all care about their patients, let’s face the fact that they are running a business and that can influence recommendations.

A case in point is the fact that a few days ago, I read something that made me think I would be a good candidate for salvage radiation therapy based on my Gleason score and time to PSA increasing. The next day, I read that, because I had negative margins, SRT wouldn’t really be an option, as the cancer would be outside the prostatic bed. Maybe I was just too drained and misread one or the other, but it sure can be confusing.

With luck, I’ll have some answers by lunchtime tomorrow.  Look for an update in the afternoon where hopefully I’ve been proven to be an overreacting drama queen.

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Day 1,768 – More Research & More Questions

Even I thought I may have been overreacting to the change in my PSA, and that I may simply be embarrassing myself spouting off the way I have.  Still, it’s better to vent and look silly than ignore the potential problem.

Of course, I had to continue my research, and the more I dug, the more I learned, and the more I began to believe that I may not be overreacting at all.

In this instant Internet information age, it’s easy to find tons of material.  In my Month 58 – Welcome to PSA Anxiety post, I quoted a Dr. Chan from Johns Hopkins University:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

On closer examination and research, though, that quote came from early 2000, over 15 years ago. There have been advances in technology in 15 years.  Lesson learned: Even though the information came from a trusted source, it may not be the most current.  Read the dates!

There have been subsequent studies by UCLA and even Johns Hopkins that suggest that today’s ultrasensitive PSA tests (uPSA) are more reliable and can, in fact, be good predictors of biochemical recurrence (BCR).

From one article on the Prostate Cancer Infolink website:

Ultrasensitive PSA reliably predicts eventual biochemical recurrence (a UCLA study)

Researchers at the University of California, Los Angeles (UCLA) looked at available evidence that the uPSA test might afford radiation oncologists the opportunity to treat patients late enough that they are assured to be on a path to clinical recurrence, yet early enough that waiting for treatment does no oncological harm. Kang et al.conducted a retrospective analysis of data from 247 patients treated at UCLA between 1991 and 2013 who were found on post-op pathology to have aggressive disease characteristics — stage pT3-4 disease and/or positive surgical margins — and who received uPSA tests….

Kang et al. found that a uPSA ≥ 0.03 ng/ml was the optimal threshold value for predicting biochemical recurrence (BCR). Other findings included:

  • uPSA ≥ 0.03 ng/ml was the most important and reliable predictor of BCR. It predicted all relapses (no false negatives: no one was under-treated), and hardly ever predicted relapses incorrectly. Only 2 percent would be over-treated by waiting for this cut-off.
  • It was especially prognostic if found on the first uPSA test after surgery.
  • Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.
  • Other lesser predictors of recurrence were pathologic Gleason grade, pathologic T stage, initial PSA before surgery, and surgical margin status.
  • At 5 years of follow-up, 46 percent of patients had a BCR using the “standard” PSA ≥ 0.2 definition, 76 percent using the PSA ≥ 0.03 definition.
  • Treating when an ultrasensitive PSA level reached 0.03 ng/ml gave a median lead time advantage of 18 months over waiting until PSA reached 0.2 ng/ml.
  • It was necessary to monitor PSA for at least 5 years post-op, and to test at least every 6 months.

That study used the histories of men with aggressive prostate cancer; mine was not.  I didn’t have positive margins and my tumor was classified T2c, so perhaps these findings are less applicable to me.  Still, the line:

Even if the first uPSA test was undetectable, any subsequent test where uPSA ≥ 0.03 ng/ml predicted BCR.

…is something that I definitely want to talk to the urologist about given that I’m at 0.05 ng/mL.  But I’m not going to get too worked up about it (I hope), because the Johns Hopkins study seemed to be broader in scope with less scary results.  However, both studies seem to indicate that the 0.03 ng/mL can be a threshold for predicting BCR.

On the other hand, Walsh writes:

Radiation also was not likely to help men who had negative surgical margins. “This is logical,” explains the Johns Hopkins radiation oncologist Danyy Y. Song, “because patients with negative margins whose PSA persists after surgery are more likely to have residual disease outside of 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 targeted with radiation).

I had negative surgical margins, so this can take the discussion with the urologist in a entirely different direction.  Another question for the list.

I know that all this research in advance of the meeting with the urologist is a form of self-inflicted torture causing anxiety, frustration, and confusion. But I’d rather ensure that I’m knowledgeable than go into the meeting with my head in the sand. Knowledge is power.

The bottom line: I’m going to keep researching and learning (with a critical eye and more than a grain of salt).  If, in the end, I’m proven that I overreacted and had nothing to fear, then I’ll be happily embarrassed and a bit smarter about uPSAs and biochemical prostate cancer recurrence.

On the other hand, if God forbid, I do have to journey down the BCR path, I’ll be steps ahead of the game and can advocate for myself with my medical team.

Is it Tuesday yet???

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Day 1,767 – A Few Rough Days

Wow. I’m back to the reason I started this blog: If I don’t write, my head will explode. Really.

After my initial meltdown over discovering the change in my PSA reading a week ago today (last Saturday), I was cruising through the last week pretty well.  Sure, it was on my mind, but only peripherally.

Thursday night, however, the thought of an increasing PSA came barreling into the forefront of my consciousness like a runaway freight train careening down a mountainside.  And it stayed there.  All. Freakin’. Night. It remained there all day Friday, too, and well into the wee hours of this morning when my body finally pulled the plug on my brain and said, “Enough! Sleep!!”

I had a flashback to the early days of this experience where I was so overcome by thoughts that I actually went to the doctor, exhausted, asking for assistance in trying to get some sleep.  I thought, “No! Not again! I don’t want to go through this again!”

No matter how hard I tried to re-focus on anything other than increasing PSAs yesterday, I kept coming back to it over and over again. Technically, I never came back to it, because I never actually left the thoughts behind. They were a constant presence.

Nothing worked, so I figured I’d tackle it head-on by breaking out Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer and researching more so that I would be better prepared for my urologist appointment on Tuesday. I’m glad that I did; I’m a little smarter this morning than I was last night.

I know that I’m getting way, way, way ahead of the facts here, but I learned that I’d be a good candidate for salvage radiation therapy (SRT) given my Gleason of 7 and being more than three years out since the increase in PSA began.  The only unknown is the PSA doubling time.  Of course, just like everything with prostate cancer, there are multiple schools of thought as to whether and when SRT should start.

But I also learned that it can take up to 8 years on average after the first sign of a PSA increase for the cancer to metastasize to the point where it can show up on a scan someplace.

At this point, the logical, analytical side of me understands that having a PSA of 0.05 ng/mL is still considered to be undetectable, and there’s no reason to panic. I’m generally okay with the number. What I’m not okay with is the movement in the numbers.

I get that most doctors believe that biochemical recurrence doesn’t occur until the PSA hits 0.2 ng/mL, with others believing that it’s better to wait until it’s 0.4 ng/mL, so 0.05 ng/mL isn’t close to either of those numbers.

I also get that emotions are fickle and often trump logic in a big way, and that’s what made me the most frustrated this week–my inability to control my emotional reaction as I would like to.  I really, really don’t want to be going back to Days 19 -22 again. Really.  But that uncontrollable emotional roller coaster is all part of the wonderful experience we call cancer.  [Sarcasm.] I hate roller coasters.

Tuesday’s urologist appointment can’t come quickly enough. Things that I’ll be asking:

  • What does going from a reading of <0.03 ng/mL for over 4 years to a reading of 0.05 ng/mL at 4 years and 8 months mean to you?
  • How and when are we going to confirm that this was either a blip or a real change?
  • If it is a real change, what’s the plan going forward?

Standby for a few random posts in the days and weeks ahead as we navigate through this new chapter in my journey.

[Oh. I had to break out my spreadsheets to calculate what day of this journey today is.]

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Month 58 – Welcome to PSA Anxiety

prostate-cancer-awareness-hero-806x307,0Blindsided.

That’s how I was this morning (I’m writing this on 5 September) when I hopped online to check on my PSA results.

Ever since my surgery in January 2011, my post-surgery PSAs always came back as <0.03 ng/mL; this time, it came back at 0.05 ng/mL. Shocked, stunned, heart-wrenched, panicked.  Yep, that was me, and then some.

Because my appointment with my urologist isn’t until 15 September, I immediately began searching for information online about increasing PSA levels after prostatectomies to learn what this meant.  Of course, I know the big picture: If PSAs go too high, “It’s baaack!” But what about from <0.03 to 0.05?? Is that significant?  If so, how so?

The Prostate Cancer Foundation and Johns Hopkins came to my rescue and calmed some of my frayed nerves.  I’m breathing again.

In the PCF article, “The Role of PSA,” they reminded me:

After prostatectomy, the PSA drops to “undetectable levels,” typically given as < 0.05 or < 0.1, depending on the lab. This is effectively 0, but by definition we can never be certain that there isn’t something there that we’re just not picking up.

It’s good to know that 0.05 ng/mL was still considered to be undetectable, and that recurrence was defined:

In the post-prostatectomy setting, the most widely accepted definition of a recurrence is a PSA > 0.2 ng/mL that is seen to be rising on at least two separate occasions at least two weeks apart and measured by the same lab.

There’s no need for me to be in full panic mode at the moment, but that doesn’t mean that I’m not concerned.  The most disconcerting thing for me is that there was movement in the PSA reading and that this may be the beginning of an upward trend.  Or it may simply be a blip in the readings. I’m doing my best to not let emotions overtake facts.

Johns Hopkins has a great article about the topic that also helped me calm down after reading it:

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

I’m really anxious to talk with my urologist about the plan going forward, and waiting the ten days between now and then will be difficult.

I would hope–and push–for another PSA test in a month or so and then, depending on its results, stepped up frequency of testing if it’s at 0.05 ng/mL or higher.  That, of course, will open the door to the wonderful world of PSA Anxiety: Test, wait, worry; test, wait, worry; test, wait, worry.

I remember how anxious I was going in for my first PSA test after the surgery and, over the last 4 years and 8 months, that anxiety dwindled.  For this week’s test, it was just a matter of routine.  I was excited to be able to call myself “cancer-free” just shy of the five year mark. Now this happened, calling that five year milestone into question (at least in my mind; perhaps not in that of my urologist).  Silly me.

I was hoping that the cancer cloud hanging over my head at this point was withering away to a thin, wispy little cirrus cloud.  Instead, this morning, I got this:

448d4-t-storm

Once cancer is introduced into your vocabulary, it’s there for good.  Period.