Tag: PSA

Day 1,861 – Meeting with Urologist

On By DanIn Prostate Cancer, Recurrence2 Comments

I met with my urologist this afternoon to review my now detectable PSA readings.

She was happy that the reading stayed essentially the same, and said that there’s no need for panic. However, she’s concerned enough that we’ll retest in four months and will probably continue to do that for the foreseeable future, just as I anticipated. This test-and-wait routine can go on for years.

One of the things that I need to work on is not putting my life on hold until the next test result. I found myself doing that between September and December, and that’s not a good thing. Time to just say to hell with this stupid cancer and move forward. If it comes back, it comes back and I’ll deal with it then.

Day 1,852 – PSA Results

On By DanIn Prostate Cancer, Recurrence1 Comment

The results are in. My current PSA is 0.04 ng/ml. In September it was 0.05 ng/ml and prior to that it had been undetectable for four years.

So what does this all mean? Hell if I know. I’ll learn more from my urologist on 15 December. In the interim, here’s my take on it.

The PSA level is still well below the biochemical recurrence level of 0.2 ng/ml, so no need to panic.

I’m glad to see that it didn’t increase beyond 0.05 ng/ml. That means it’s consistent for now (why quibble over one one-hundredth of a nanogram) and perhaps the change in lab methodology to the ultra-sensitive PSA test is, in fact, what’s driving the elevated readings.

On the other hand, that may not make sense. The less sensitive PSA test (accurate to 0.03 ng/ml) would have been able to detect the 0.05 or 0.04 readings if my PSA was elevated prior to the conversion to the uPSA test. That tells me that my PSA has risen slightly in the last year.

I have to admit that I hoped for better news but am glad it’s not worse news. As I predicted a while back, I suspect we’ll continue to monitor my PSA on a more frequent basis (quarterly?) going forward for years to come.

I’ll share the urologist’s thoughts after the appointment on the 15th. Thanks for your kind thoughts and support along the way.

Day 1,849 – Pricked

On By DanIn Prostate Cancer4 Comments

I arrived at the clinic right at the scheduled opening time, and nine people were already checked in ahead of me. After waiting 1 hour and 25 minutes, my arm was pricked and the blood was drawn for my PSA test.

Now the waiting begins. With the impending weekend, I’m not sure that I’ll have my results before Monday.

Day 1,848 – Blood Draw

On By DanIn Prostate CancerLeave a comment

Went to get my blood drawn at noon only to learn that the clinic lost the contract for two of its three lab technicians, so they cut back the lab’s hours to end at 11:30 a.m. No blood drawn today.

Needless to say, I’m pissed.

Now I either take off work tomorrow to get the blood drawn, or I wait a week until my next day off. Guess I’ll be late for work because, psychologically, I was geared up for everything to happen this week. Not sure I’m up for waiting another week to ten days.

More to follow.

Day 1,781 – Grappling with PSA Anxiety

On By DanIn Emotional Aspects, Recurrence2 Comments

Wow. This is going to be tougher than I thought.

Ever since that stupid PSA test crept upward from undetectable to detectable at 0.05 ng/ml, I can’t seem to get that fact out of my brain. Even when I can focus on something other than that, it’s still ever-present, lurking in the background ready to consume my thoughts at the first distraction.

Interestingly, I’m not sure it’s the possibility of the cancer returning that I fear, or even the side effects of potential salvage treatments (although some of those can be quite scary). It’s too early to think in those terms. My immediate concern is more about having to play this freakin’ waiting game and the possibility that I’ll be playing this waiting game every three to six months for years to come.

Yes, I’ve already suffered through PSA anxiety after the surgery, so you think I’d be used to it by now. But in a post-surgery world, each time the result came back undetectable, my confidence that I was one step farther away from cancer grew. Now the situation is reversed. With each test, it’s no longer an affirmation of the good news that I already knew (undetectable); now it’s a reason to worry about the unknown. “Did the PSA move upward? If so, how much and how quickly? How many ng/ml am I closer to recurrence?”

I know that each day is a gift and that we’re to live in the moment. Now, though, I feel as if I’m in a state of suspended animation, waiting for 2 December to roll around for the next needle prick. That can’t be. I need to be living for today in case tomorrow I cross the 0.2 ng/ml threshold.

Early in this adventure, I said that we can’t always control what happens to us, but we can control how we react to it. It’s time I followed my own advice–gain control over this PSA anxiety monster.

Wish me luck.

Stupid cancer.

Day 1,769 – Getting Prepared

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence, TreatmentLeave a comment

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 1,767 – A Few Rough Days

On By DanIn Emotional Aspects, Prostate CancerLeave a comment

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

On By DanIn Prostate Cancer1 Comment

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.

Month 52 – Less PSA Testing; Rise in Prostate Cancer

On By DanIn Incontinence, Prostate Cancer, Research, Sexual Function, Side EffectsLeave a comment

Wow.  It didn’t take long for this to happen.

You may recall that in 2012, the U.S. Preventive Services Task Force (USPSTF), recommended abandoning PSA screening of any men of any age.  (In 2009, they recommended no screenings for men over 75.)  Now there’s early research showing a 3% per year increase in intermediate and high-risk prostate cancer cases.

The article, Did PSA Test’s Decline Spur Rise in Prostate Cancers, cautions that this is only one study, but that there was a measurable difference since the change in USPSTF guidelines:

Between 2011 and 2013, the study authors noted a 3 percent per year increase in the percentage of prostate cancer patients who had a PSA level of 10 or higher at the time of their diagnosis. PSA levels of 10 or more signify intermediate or high-risk prostate cancer.

Further studies, of course, are needed to confirm these findings.  But if they are confirmed, this could be quite troubling.

The rationale behind eliminating PSA screening was that too many men were being over-treated and suffering life-long side effects impacting quality of life, when they could have lived a relatively normal life with a slow-growing cancer inside them that would have never killed them.

If I were starting this journey today, I’d want to have the formerly routine annual PSA tests and then scrutinize my treatment options very carefully.  I would not want to wait until I became symptomatic and discover I have a PSA of 10 or more on initial diagnosis.

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As far as my personal status is concerned, I continue to lose weight (now 23 lbs. / 10,4 kg since 1 December 2014), and my occurrences of stress incontinence continue to decline.  (The were pretty infrequent before, but even less so now.)  Sexual function seems to be about the same or just a tad better.

Month 50 – Four Years Cancer-free & Cancer Death Rates

On By DanIn Prostate Cancer, ResearchLeave a comment

Okay, I’m the first to admit, that’s an odd combination of topics in the title.

First, the good news: My PSA remains undetectable four years and three days after that prostate was plucked from my body.  My birthday was this week, so still being cancer-free is a great birthday present.

I got my latest results online this afternoon, and I have an appointment with my urologist on Tuesday.  We’ll see what she has to say about the frequency of monitoring.  This result was at an eight-month interval; prior to that, I was being checked every six months.  Who knows… Maybe she’ll say come back in a year.  (Honestly, I’m not sure how I would feel about that.)

Aside from that, my sexual function issues and mild stress continence remain the same as before–no real changes to my “new normal.”  I’m generally okay with that.

Oh.  I haven’t had time to create it yet, but look for a new page on the blog, “Life After Radical Prostatectomy – 48 Months Later” coming soon.

*     *     *

As you can tell from my last post, I’m focusing a bit less on the physical aspects and a little more on the emotional aspects of being four years out.  I never really threw myself into the dating pool after the surgery, because I had it in my mind that I was “damaged goods” and that no one would want to deal with that.  It’s taken me quite a while to beat that thought into submission, and I’m ready to try.  Who knows what will happen.  I may get rejected 9 times out of 10 once the person learns of my issues, but it’s the one person who says that it’s not a problem that will likely be the best one to hang onto.

So dating is one of my New Year’s resolutions, and the other is to lose some weight.  I really think that’s been a contributing factor in some of my stress incontinence issues.  Since 3 December 2014, I’ve lost 11.5 lbs / 5,2 kg.  Not bad considering the amount of food thrown at me during the holidays.  Will power.

*     *     *

On a different note, the Prostate Cancer Foundation recently published a story talking about the decline in cancer death rates over the last 20 years.

Jemal also noted that during the past two decades, deaths from colon and prostate cancer have been nearly cut in half, and breast cancer deaths have dropped by a third.

“Really, it’s due to screening, as well as improved treatment,” he said. “It’s really remarkable.”

One thing that will be interesting to see is how the death rates are affected by the recent changes in prostate cancer screening guidelines.  I hope that there’s not a reversal in that trend as a result.