Should I panic?

It's been a while since I've visited this site. I thought I had moved on, but.....

It's been 17 months since my robotic protatectomy (T1C, Gleason 3+4, PSA 5.6... all margins/lymph nodes/seminal vesicles clear). Up until my latest PSA test (yesterday) my results were coming back undetectable. Yesterday's results were 0.1. Of course I immediately got on line and started reading. All indications are I don't have to be concerned until it reaches 0.2 but it just seems like a big jump going from <0.1 to 0.1 in a 3 month period. My next appointment with my urologist is 3 weeks out, until then I'd appreciate any words of wisdom.

9 Replies

  • Don't panic. It's still a very small number. Even if it goes to 0.2, don't panic. Hopefully it has not come back, but if it has, you still have many treatment options.

  • It is not true that "I don't have to be concerned until it reaches 0.2 ," but that is a common misinterpretation. 0.2 has arbitrarily been set as the level of "biochemical recurrence (BCR)." This level was set many years ago before there were ultrasensitive PSA (uPSA) tests. Back then, the lowest detectable level on a conventional PSA test (like the ones you've had) was 0.1, so they set 0.2 as the BCR just because it was above that. That is really all the science that went into it.

    As the uPSA became prevalent in this century, doctors have started to use it to predict if a true recurrence was in the works. Three major randomized clinical trials proved that adjuvant radiation (immediately after surgery) had better oncological outcomes than a wait-and-see approach. But adjuvant radiation would result in a lot of overtreatment. So they looked in the databases to see if there were a low uPSA level that could RELIABLY predict true recurrence. This is called "early salvage." In the study below, the authors warn:

    "Our data would suggest potentially a traditional cut-off of 0.2 to define biochemical failure may be too late, and that at the first sign of a detectable PSA that SRT (or SRT + ADT) should be initiated."

    What some researchers found for someone with your favorable pathology (no positive margins and no EPE or SVI) was that a good predictor is if (1) the uPSA is >0.03 AND (2) Two subsequent increases in PSA, and/or PSA velocity of 0.05 ng/ml/yr or greater.

    I think it is prudent to ask your Uro to call in to your lab a scrip for an ultrasensitive PSA test. Based on that, you may want to set up your next meeting with a radiation oncologist rather than a urologist. Remember, Uros do not typically follow patients after salvage therapy. It is the radiation oncologist who has the knowledge and experience with cases like yours.

  • sounds normal, mine has been .00 or .01 for 12 years now, just be happy and live life

  • Thank you James.

  • Hi, Scott--I'll respond to the emotional part of your question.

    And at the outset, everything I say, reflects my own experience dealing with a majority of doctors, hospitals and their support systems.

    I don't know much about the science involved in your question (plus it sounds like other men on here have replied to that part of your query) but I do know about living with anxiety or panic. It doesn't help anything--except maybe shareholders in pharmaceutical companies selling anti-anxiety medications.

    I'm not dismissing the real fearful feelings you could have. But on a practical level, I find that if i acknowledge I'm frightened I make a much more, responsible informed decision in the end. And here's why:

    for me fear puts up a separation between reality and my own powers of reasoning and intuition.

    At 68, I've had my share of medical issues (apart from my prostate cancer diagnosis in 2003) but the one thing ALL my medical concerns have taught me is that doctors, hospitals, and the systems they have in place to support them are subject contradiction all the way to error. Once I took the bulls by the horn and really delved into a medical professional's diagnosis, I was able to find individuals willing to agree with me that maybe my instincts about the cause of a problem I brought to a medical appointment were as valid as what a physician attributed to the issue to.

    Had I panicked or lived in the fear only, I'd never open myself up to a level where I trusted my own instincts and then did the searching to see if maybe I could be right. More importantly, what if I chose a procedure specifically because that person in the white lab coat said his/her recommendation was the solution to my problem ? And my motive for accepting that was because I was in fear.

    I think that it's entirely natural for patients to want scientific backup to causes and/or treatments. But when I put my treatment COMPLETELY in the hands of other people (which is what my fear used to lead me to do) I became more susceptible to mistakes, over medicating, etc.

    Good luck in the weeks ahead.

  • Thank you so much for your insightful comments. Now that a couple of days have passed I have calmed my thoughts a bit. What will be will be and I will cross the bridges when I come to them.

  • How very true. In addition, I found (find) it helpful to have 2 trusted people involved in my decision making .. in my case my partner and my sister.. since they can listen better and think more rationally.

  • Exactly. Do you realize how powerful what you wrote back is ? "What will be will be". And that doesn't preclude saying that you yourself can't impact the steps forward after your upcoming urologist's appointment, Scott. Good luck. If you need to chat further, chat with me here.

  • You're very kind Harv. Again, thanks so much.

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