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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 <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 <0.02 or <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 80’s. Mine might come back, but by being checked semi-annually, it’s not going to come “roaring back out of control”.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Chuckcole
    2 months ago

    I’ve been fighting cancer the last three and a half years. And after 5 different chemo I finally got my PSA down from 1000 down the 162. Which I’m very happy aboutof course some men think that 162 is still too high that depends on the person everybody is different. I’m still an active chemo patient getting taxotere which is a really horrible chemo but it’s keeping me alive I’m doing really great even though my PSA is 162. Will it eventually go down, yes but very slowly I have stage 4 but a very advanced cancer. But I’m doing good I can eat what I want go where I want. Don’t let the PSA make you squeamish. There are other factors they test to see where your cancer is. Chuck moderator prostatecancer.net

  • sevensix
    3 months ago

    Hi Len; Thanks for your quick reply. Checking my data PSA last month is <0.03ng/ml. I'm hung up on the "0.03" number because last year in January it was 0.03, by August ascending to 0.12 and thus the recurrent diagnosis, immediate immersion into ADT, IMRT 39 days completed 12-26-19. Why wasn't the first PSA 0.01? PSA is not detected at 0.03 (doc confirms yesterday) but what I am suggesting if it increases in three months beyond 0.03 then it has a potential trajectory towards unquestionable detection values. I am saying 0.03 cannot be dismissed entirely from this equation. Tomorrow I see urology continuing this discussion over something not yet detected. Doc will put me at ease. I trust him. Cancer has me spooked because my PSA, without fail, always told a story. I appreciate your kind words.

  • sevensix
    2 months ago

    This morning was a very productive confab with urology doc discussing and cussing PSA interpretations. The bottom line <0.03ng/ml is below the threshold of detection. It used to be 0.01 but convention stepped in with a revision to establish 0.03 as not detectable value. Much enlightenment here. PSA quarterly for the immediate mgt options amenable to all. If PSA values increase, well, that is a conversation for another time. For now I am OK ready for a power nap. Bye y'all.

  • sevensix
    3 months ago

    The glory days of “cancer free” was a snake in the grass when, seventeen months post-prostatectomy PSA quadrupling, recurrent prostate cancer was diagnosed. Indeed, I got bit. February 5 2019 PSA courtesy of VA reported 0.01ng/ml – undetectable that was reassuring. Last Month the local lab conducted another PSA reporting 0.03ng/ml, also undetectable. Granted, different analyzers intro-
    ducing a variable into the equation where caution jumping to conclusions is warranted early in PSA oversight. Let me assume a scenario in three months another PSA reveals 0.03 or higher, the data from March 0.03 now becomes a significant number modeling a possible trajectory. Was the initial 0.03 really undetectable, or an indicator of cancer aggression? In July PSA will reveal itself once again. I hope my thinking is in error.

  • Len Smith moderator author
    3 months ago

    Sevensix, was the number 0.03 or 0.003? And did the 0.03 (or 0.003) have the less than symbol, <, in front of the 0.03? In that case it meant that at the lower limit of that PSA test, none could be detected. I had a prostatectomy in 2013, and two years to the month after the prostatectomy, I had an actual 0.1 PSA, the lowest the standard PSA test will detect. It was reconfirmed and that summer I had 39 radiation treatments that ended 9/16/15. Happy to say my PSA has been undetectable ever since. And I wouldn't be overly pessimistic as the odds are against it, but more importantly, when they catch a recurrence early, the results are almost always successful. Our best to you, Len Smith ProstateCancer.net Moderator

  • Len Smith moderator author
    2 months ago

    Sevensix, actually PCa can be detected at 0.03 on both the ultra-sensitive test, which can detect down to 0.02, and what I call the ultra-ultra-sensitive test that can detect down to 0.003. (Ironically, a lot of guys don’t get their zeros right in reporting their test results here, and I thought you were having the ultra-sensitive test and it was really 0.003.) But if it’s the first ultrasensitive test that came out, 0.03 means it found something but early enough that they should be able to get it easily unless it’s in some out of the way place in your body. BTW, I’m jealous the VA does one of the sensitive tests for you as they’ve only done the standard test on me (the 0.1 I mentioned earlier).

  • donuts616
    3 months ago

    Great article about psa and to keep getting tested. I’m 16 years out and I get my psa now once a year and thank God I’m undetectable as well. I still go back to my uraligist, in nyc. Every day is a gift and I take nothing for granted.
    Lets hope our psa’s stay undetectable for the rest of our lives! 🙏🙏

  • Len Smith moderator author
    3 months ago

    Donuts616, I love your attitude that every day is a gift and you’re not taking anything for granted, which I assume means you’re on top of all your health and especially your PCa not coming back. Couldn’t agree more.

  • Sam Collins
    3 months ago

    I agree Len, mine shows 0 after 13 1/2 years fighting it. Using the same lab and doctor at the VA Hospital and I have never seen a 0 since I started this journey. I have had tons of treatments through the years and it went to my lymph nodes and my skull (bone). Some like to call it remission. Once it’s incurable it’s incurable. It may be controlled for years or dormant but I believe once you have any kind of cancer you will have a little black cloud hanging over your head. You may or may not be cured but like you say never quit getting checked for the rest of your life. It is our responsibility to stay on top of it for the rest of our life. You may just die at 100 years old by natural causes of just being old. Never just quit checking because you think it’s gone. Just keep living and enjoy life the best you can and stay up on you health. Don’t put it off!

  • Len Smith moderator author
    3 months ago

    Sam, thanks for the complements. I like to say your little black cloud is the Sword of Damocles hanging over us and can come down on us at any time. But the original Sword hanging over Damocles’ head was held up by a horse hair. I believe the more we stay on top of our PCa, the thicker our cord holding up our Sword becomes. As far as living to 100, I had open heart surgery last year to replace my aortic valve for the second time. It looks like I will have to have it replaced every 12 years, so I’m one of the very few people you’ll meet who’s hoping for open heart surgery at 97 or 98.

  • Dr_WHO
    3 months ago

    So true. I was diagnosed with Stage 4A Ductal Prostate Cancer. Had surgery (even though it metastasized to the pelvic lymph nodes), 2 1/2 years of Lupron, 15 months of Zytiga and 38 rounds of radiation. Last December I went into remission. However, three weeks ago a CT scan picked up a spot on my lungs. Will not know if it is cancerous until July. The key was keeping up with the scans.

  • Len Smith moderator author
    3 months ago

    Dr. Who, wow, you don’t do anything halfway do you. (For those not familiar with Ductal PCa, it doesn’t give off much PSA, so invariably it is caught very late. In other words it’s bad.) (An interesting statistic is 0.4 to 0.8% of people getting PCa get the Ductal form, but for those getting it, it’s 100% for them.) I’m curious why they won’t know if the spot on your lung is cancerous until July?

  • fhall4au
    3 months ago

    And, in my case I had recurrence to bone (spinal column) with PSA <.01 and testosterone 0, 2.5 years after chemo, 70 IMRT radiation treatments, 45 to prostate and 25 to distant lymph nodes. Also, undetectable by bone or CT scans.

  • Len Smith moderator author
    3 months ago

    fhall, you’ve had one heck of a PCa fight. So happy it’s undetectable by bone or CT scans. That’s super, and I sure hope it stays that way forever. Our best to you.

  • Will Jones moderator
    3 months ago

    Thanks, Len, for the detailed information and clarification. I think I’ve used “cancer free” to describe my status even though I know better. Maybe it’s a psychological ploy. And I agree completely with the importance of ongoing PSA tests. That’s a regular part of our discussions in my support group.

  • Len Smith moderator author
    3 months ago

    Will, thanks. And yes, you did use “cancer free” once in an article, and i cut your English grade on it to an 80. (For those not aware, Will is a retired English teacher. Couldn’t let that go by.) But super glad you keep reinforcing the importance of ongoing PSA tests at your support groups. I sure find in our support group, some guys still need a kick in the butt to stay on top of it.

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