Day 1,770 – Let the Waiting Begin

It’s amazing how people in southern California forget how to drive when a little liquid sunshine falls from the sky.  Focusing on the horrible traffic in the rain kept my mind off the discussion that I was about to have. As soon as I plopped into the chair in the waiting area, the anxiety level shot back up.

The good news is that I’m not an overreacting drama queen. The bad news is that the doctor shared my concern about the movement in the PSA, but with a significant caveat.

In March of this year (after my PSA test in January and before this one in September), the hospital switched over to using the new ultrasensitive PSA test, so comparing numbers from January to September may not be a direct apples-to-apples comparison. With the new test, some of her other patients are experiencing the same phenomenon–undetectable for years, and now coming in at 0.03 – 0.05 ng/ml with the new test.

She did say, however, that she was concerned enough that this “warrants watching” to try and figure out what’s really going on, and she wants me to return in three months. The September reading will, in essence, be a new baseline uPSA, and we’ll see what December’s has to offer.

Doing the test sooner (like this afternoon!) would be too early after the 2 September test. By waiting three months, we’ll get better insight into what’s happening and what the uPSA velocity may be if it continues upward. The faster the increase, the more urgent the need for subsequent treatment.

We did briefly discuss what would happen if there are signs of recurrence. One of the first things that may come into play is getting a bone scan to see if it has spread. We talked of salvage radiation therapy (SRT) and a little about hormone therapy as options when we get to that point. We didn’t go into a lot of detail on either, mainly because I didn’t press for a lot of detail at this point and virtually everything she said fell in line with the research that I had done. It’s far too early to be thinking in those terms because we don’t know what we’re dealing with yet.

I did mention the recent studies that indicated that a 0.03 ng/ml reading on a uPSA was showing itself as a predictor of biochemical recurrence, and she really didn’t offer any insights on that one way or the other.

It appears that I’m probably headed back to a quarterly testing schedule for a while until we figure out exactly what’s happened. Just a change in testing methodology? Rising PSA?  Full moon?

My next appointment is 15 December. Merry Christmas!

Let the waiting begin.

[We now return you to our regular blog posting schedule, or at least until I have my next freak-out.]

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200th post!!

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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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.

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 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: 42 Months Later

So it’s been three and a half years since my radical prostatectomy.  How am I doing?

Continue reading “Life After Radical Prostatectomy: 42 Months Later”

Life After Radical Prostatectomy: 36 Months Later

So it’s been three years since my radical prostatectomy.  How am I doing? 

Continue reading “Life After Radical Prostatectomy: 36 Months Later”

Life After Radical Prostatectomy: 30 Months Later

So July 4th marks 30 months since my radical prostatectomy (and 30 months of independence from cancer!).

Where am I at in this journey?  Well…

Continue reading “Life After Radical Prostatectomy: 30 Months Later”