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.

New Home

Please note there’s a new, simpler URL for this blog:

dansjourney.com

Hopefully, that makes it a tad easier to get to if you haven’t subscribed to receive email updates.  Don’t worry. The old URL, dansjourney2014.wordpress.com, will still work, too.

Prostate Cancer Awareness Month

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Image from cityofhope.org

It’s September and that means it’s Prostate Cancer Awareness Month. One in seven men will develop prostate cancer in their lives.

Please take time this month to understand and learn more about prostate cancer and to spread the word.  Awareness saves lives.

If you haven’t been checked recently (or ever), make an appointment with your doctor.  It was a screening during a long-overdue physical exam that caught my cancer, and here I am 4 years, 9 months, and 21 days since my diagnosis, still alive and advocating for prostate health.

The Prostate Cancer Foundation offers a great overview for those wanting to learn more.  Check it out here.


On a related note, I go for my next PSA test this week.  Results to follow in my next regularly scheduled post if I have them by then.

 

Month 57 – Overcoming Self-imposed Barriers

Before jumping into the meat of this month’s post, please remember that September is Prostate Cancer Awareness Month.  Spread the word.  Take time to learn about prostate cancer risks, diagnosis, and ever-differing treatment options from your physician or from other great resources.

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Where to begin?

Physically, things have been going pretty well for me, but for the last month or so, I’ve been struggling more and more with the social and emotional impact of my radical prostatectomy.

Most men who are old enough to be diagnosed with prostate cancer are already in a relationship and have been for years.  They’ve got a supportive partner who, hopefully, stands by their side long after the treatment has been given.  You sign up “for better or for worse,” and you stick it out.

But not me. I was single when I was diagnosed, and I’m still single today.

Before I get into why this has been bugging me so, a bit of context is in order.

If you’ve taken the time to read my biography in the About Me section, you already know that I’m gay. I was a late bloomer who put himself in circumstances that made it difficult to have a relationship as a gay man.

I spent 12 years as an officer in the United States Navy, long before “Don’t Ask, Don’t Tell” was enacted.  Having a relationship while on active duty just wasn’t going to happen. I was too afraid of losing my career if anyone ever discovered that  was gay.

When I left the service, I landed back in my home state of Illinois for my master’s degree, and then in a small town of 6,000 people in rural southeastern Indiana working in a manufacturing management role for 17 years.

Given the recent news about gay rights issues in Indiana, you can understand, too, why I remained closeted there. Too many of my coworkers–mostly management–expressed homophobic views that made me wary of being open about myself.  I perceived that there were real risks to my career if I came out.

After my prostatectomy, things at work were changing to the point where I dreaded getting out of bed and heading to the office.  Having been diagnosed with cancer, I realized tomorrow isn’t guaranteed, and if I wanted any shot of finding someone to share my life with, it wasn’t going to happen in Indiana.  It was time to act.

So in January 2012, a year after my surgery, I bought a house in the San Diego area (I had been stationed there in the Navy and fell in love with it); I quit my job in March; made the move in April; and sold my Indiana home in May (not exactly the normal sequence of events for such a major transition).  I had been given a second chance, and I was going to take full advantage of it.

My best-laid plans of finding Mr. Right hit a snag–a psychological snag.

In my mind, I threw up this impenetrable wall concerning sex after a prostatectomy.  I viewed myself as “damaged goods”–difficulty getting and maintaining an erection and dry orgasms–and simply didn’t know how to sell that to a potential partner.  True, sex is not everything in a relationship, but it can and should play an important part.

That concept of being damaged goods paralyzed my efforts to hit the dating scene.  “How do I tell them?  What do I tell them?  When do I tell them?”  In my mind, I couldn’t move forward until I had answers to those questions.

Thankfully, I have a dear friend who, I swear, knows me better than I know myself.  She gave me a cross-country slap upside the head from her home in Maryland that knocked some sense into me.

The only way that I’m going to get answers to those questions is through my own personal experience of getting out there and trying to date.  Each guy will respond uniquely and differently than every other guy, so there’s no sense trying to come up with a one-size-fits-all approach.  Some will want to know on the first date; should things progress so far, others may wish that I told them before taking things to physical intimacy (“Oops!  Surprise!”); and others will be thankful that I won’t be ejaculating all over their brand new 600-thread count Egyptian cotton sheets.

It’s time to break down the remainder of that psychological barrier and get out there and see what happens. I’m sure that there will be ups and downs with rejections happening more often than not, but that’s okay.  It’s time to move forward with that second chance I’ve been given.

Month 56 – Watchful Waiting Increases

I was struggling with a topic for this month’s post.  You read in my 54-month update that things are going well for me, and I hate sounding like a broken record month after month.  But then this article appeared and I knew that I had to comment on it.

“Watchful Waiting” Becoming More Common for Prostate Cancer Patients

As a certified geek who likes numbers, I get the science and statistics behind moving to a watchful waiting or active surveillance model.  As a human being, putting “wait” in the same sentence with “cancer” is so counter-intuitive that it boggles my mind.  But, as a human being living with a mild version of the common side-effects of treatment (incontinence and impotence), it also makes me wonder if the watchful waiting approach could have been for me.  That conundrum is the infuriating part of being diagnosed with prostate cancer.

Treatment decisions are very personal.  If I was 65, 70, or 80 years old when I was diagnosed and I was a candidate for watchful waiting, I may have given it much greater consideration as an option.  But I wasn’t.  I was 52 years old when I was diagnosed, and in my mind I wanted to maximize my chances of getting to 65, 70, or 80 years old.  I wanted a Plan A (radical prostatectomy) and the option for a Plan B (radiation, chemo, hormone therapy, etc.) in case Plan A wasn’t effective.

Was I “over-treated,” as the article suggests so many prostate cancer patients are?  That’s one of those nagging but unanswerable questions.  I’m alive, and it is what it is at this point.  No going back.

So if you’re newly diagnosed, I’m sorry to say that you have some tough choices ahead of you.  Do your research; decide what’s important to you and what you can live with (or without) in a post-treatment world; and take as much time as you need to come to a decision that you can live with for the rest of your life.

Trends in Management for Patients With Localized Prostate Cancer, 1990-2013

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Life After Radical Prostatectomy: 54 Months Later

So it’s been four and a half years since my radical prostatectomy.  How am I doing?  (Remember, what follows is a graphic description, so proceed only if you want to read…)
Continue reading “Life After Radical Prostatectomy: 54 Months Later”

Home Run Challenge, 15-21 June

The Prostate Cancer Foundation and Major League Baseball join forces next week to raise funds to help find a cure for prostate cancer with their annual Home Run Challenge.  Check it out.

Now if we could only get the National Football League to do something similar in September during Prostate Cancer Awareness Month before they start wearing pink in October for Breast Cancer Awareness Month…

 

Month 55 – Sick of Being Sick

I hate getting sick.

The week before Memorial Day weekend, I came down with a nasty end-of-spring head cold that kept me home from work a couple of days.  It also put me back into incontinence pads.

Heavy coughing certainly increased the likelihood that I would have stress incontinence episodes, so I started wearing pads as insurance.  I’m glad that I did, because several times they were definitely needed.  I will admit, however, that I did better than I expected in many cases, and I attribute that to my recent weight loss.

The one thing that I’ve had difficulty controlling is stress incontinence while I’m standing.  If I’m standing or walking when I sneeze or cough, there’s a much greater likelihood of leakage, no matter how hard I try to control my pelvic floor muscles.  That’s where the pads came in really handy.

The unfortunate thing with this head cold is that, even though the worst of it lasted only a couple of days, the nagging cough lingered for a good week and a half after.  Ugh.

The moral of this story: Keep pads on hand for those unexpected times when you may need them.

This recent Prostate Cancer Foundation article, Excess Weight Linked to Worse Prostate Cancer Diagnosis, reinforces my will to keep losing weight.  Sure, it may be a case of me closing the barn door after the horses have escaped, but getting to a healthy weight can only be a good thing in the long run for a whole host of reasons.