Thinking “Cancer Free” Might Come Back to Bite You!
I have commented to numerous guys here at ProstateCancer.net who’ve had prostate cancer (PCa) and a prostatectomy and later in their PCa journey reported they are "cancer-free" or their PSA is zero. Their interpretation of either the lab results or what their doctor told them is incorrect. And a big thank you to Shayna, on the editorial team, for suggesting I write an article on this to really dig into the reality of the PSA after a prostatectomy.
Understanding your test results
I waited until today, 3/12/19, to write this as I just got my 6-month PSA results. In 4 days it will be exactly 3 ½ years since my radiation ended. The results are shown below, and this means a big celebration tonight as well:
This was the standard PSA test and the result is shown as less than 0.10 ng/ml, which has some important points:
- The < symbol means it is less than 0.10 and the ng/ml means it’s in nanograms per milliliter of my blood. The standard test can only detect PSA down to 0.1 mL’s per gram, so this is read as less than the test’s lowest limit of 0.1, which means my PSA is undetectable. Note this does not mean I’m cancer-free nor that my PSA is zero. All that is known is it’s below the detectable level of this test.
- Two more updated PSA tests now detect also in ng/mL, but down to 0.02 and 0.003. Again your results will not come back as zero but less than 0.02 or less than 0.003, again their lowest detection limits, which means your PSA is undetectable, not zero.
- A lot of people translate these numbers as zero PSA, but in reality, it means your PSA is somewhere between zero and just under the maximum detectable level of each test, both of undetectable.
- Nanogram means billionth of a gram, and a gram is 1/28 an ounce, so one teeny, tiny amount, but again not zero.
Why does this matter?
The reason I’m so buggy on everyone’s understanding of the difference between zero and undetectable is human nature.
There are roughly 3 million to 4.5 million cells (I'm going to call this range 4 million cells hereafter for simplicity) in normal-sized prostates, which is 20 to 30 grams (28.35 grams equals an ounce) out of the 10 trillion cells in the entire body of a 154-pound man. A normal PSA count produced by these 4 million cells (the entire prostate) is 4.0 or less ng/ml and to repeat what I noted above, a nanogram is one billionth of a gram.
If a few PCa cells have escaped (metastasized) to the prostate bed or elsewhere in our body before our prostatectomy, the cancer cells are going to have to multiply quite substantially before they are producing a detectable PSA after we’ve had a prostatectomy.
In my case, I had my prostatectomy on 6/5/13 and my cancer was a Gleason 9 (5 + 4). I had a PSA test done every 3 months after that, and on 6/14/15, I had a positive PSA of the minimum for the standard test of exactly 0.1. I was told they wait until it reaches 0.2 before doing anything, but when it was reconfirmed as 0.1, I said with a Gleason 9, I want it treated NOW. (The thought of a Grade 5 PCa growing and probably doubling inside me was not my idea of fun.) So I started radiation on 7/23/15 and finished it on 9/16/15, and my PSA has been undetectable ever since. Even though my Gleason 9 had grown enough to produce detectable PSA, they brought me back to undetectable, and I’m fine.
Never stop getting tested
Finally, my real reason for pointing all this out is I’m sure a lot of guys who think they're "cancer-free" after several years will say the heck with it and stop get their PSA tested. Big mistake!!! PCa can lie dormant for 20 or more years, and then come roaring back. And just like catching the PCa initially, the earlier a recurrence of it is caught, almost always the better the outcome as I’m living proof of. And c’mon -- when that needle’s in our arm for blood for other tests, what’s the big deal about having another vial drawn for our PSA test?
Patti, my wife, worked in sales and marketing for two healthcare companies. Since I started moderating for ProstateCancer.net in December 2017, she became aware of two guys whose PCa came roaring back over 20 years later when they both were in their 8's. Mine might come back, but by being checked semi-annually, it's not going to come 'roaring back out of control'.
How much do you worry about prostate cancer coming back after treatment?