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Waiting is the worst part

Prostate Cancer | Last Active: Mar 18 6:00am | Replies (24)

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I hear you...sorry you feel the same as, well...most of us. I call prostate cancer the "Black Raven" that is sitting on my shoulder, and will be sitting there for the rest of my life...occasionally pecking at my head to remind me "I'm still here, and one day, I am going to kill you."
In many cases/types of cancer, you have the surgery to remove the tumor, and you can happily declare with much relief: "I am cancer-free". That is unfortunately "not" the case with prostate cancer. All of us who had our prostate removed, along with our two seminal vesicles and two vas deferens, would like to say: "I am now cancer-free", but we all know that a good percentage of us will see a biochemical recurrence (BCR) first, followed by more testing to see to what extent the presence of the cancer has grown back...and "where", after years of having no detectable PSA. We'll go through a PET Scan again at some point to see if there is enough PSA-producing prostate tissue present to take-up enough of the Gallium-68 tracer to be detected, so the urologist can say: "it is confined to your prostate bed", or "it is in your lymph nodes", " or worse..."it is in your bones."
The problem really is the pivotal surgical pathology examination of your surgically-removed prostate, that tells you whether your tumor started to spread outside the prostate having broken through the membranous tissue capsule that surrounds the prostate ("Extraprostatic Extension" or "EPE"). If/when that happens, all bets are off. Your pathology report will likely say that you have "surgical margins", which means that the entirety of the prostate and tissue removed from you, showed cancerous cells right up to the edge ("margin") of the tissue, meaning that it really extended beyond that, but was let in your body. How much and to where...who knows?
The only good news that I/we can hold onto, is that as my surgeon said: "like all cells, the cancer cells need blood supply to live and grow, and...I removed all of the blood supply that the could do that." But they still won't say "your cancer will never come back." If cancer cells survived by migrating/"crawling" (so to speak) to find blood supply before they died, then they just might have found that blood supply, and any hope you had to remain cancer-free, just flew out the window.
It amazes me to read of guys who had the radical prostatectomy 5, 10, or 15 years ago, and had undetectable PSA levels all that time, then they write a post here years later, that their PSA is rising and they found out the cancer has moved into their lymph nodes and/or bones...or perhaps is still confined to the prostate bed. "How" does that happen?
There are theories that prostate cancer (like other cancers), actually send out "scout cells" long before you are ever diagnosed. These scout cells just keep circulating and dividing/replicating to remain alive, and then after years and years, they "decide" to attach to a certain area and begin more establish growth that eventually causes the detectable rise in PSA. To me, a person with a Cellular/Molecular Biology degree, and a degree in Clinical Lab Science who was a Director of Clinical Pathology ("The Lab") for 20 years of my 38-year Laboratory career, it is just mind boggling. I wish you the best...trust in God and pray every day for guidance on how to live and manage your life...with that black raven on your shoulder.

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Replies to "I hear you...sorry you feel the same as, well...most of us. I call prostate cancer the..."

@rlpostrp
It’s not scout cells. As this article discusses, the cells can become dormant and at some point in your life Come back and make the cancer aggressive again. I’ve been at ancan.org Weekly advanced prostate cancer meetings where people who have been undetectable for 15 or 20 years have come back and Said their PSA is rising and they need help.

An article about dormant prostate cancer cells
https://www.nature.com/articles/d41586-025-04149-3
More information

As most of us already know, cancer cells can enter a dormant state and they can remain in this sleep state for years before they decide to wake up and cause problems. We’ve seen it in several of our members over the years. Thankfully, it is now a highly active area of research.
These dormant cells are known as DTCs – Disseminated Tumor Cells. This is not the same as metastatic cancer cells which are actively growing and spreading. DTCs are like hibernating bears with a greatly reduced level of metabolism, just enough to keep themselves alive but under the radar of our immune system. They undergo a dramatic change in energy utilization by a process called autophagy, which literally means “self-eating.” This makes them immune to standard chemotherapy, which targets rapidly dividing cells.
Dormant cells can also undergo a change in shape by reducing their surface tension and becoming softer and rounder. This makes it harder for immune cells to latch onto and destroy them.
As if this wasn’t enough to make you think of some sci-fi horror flick, the DTCs interact with the tumor microenvironment and summon proteins like Collagen III to act as a "blanket," signaling the cancer cell to stay asleep. If this environment is disrupted (by inflammation or injury) the cell wakes up and starts dividing.

@rlpostrp Yeh, I’m one of those guys. Ten years after a RARP, and undetectable PSA, my PSA rose to 0.11 (June 2025). Palpable lesion in my prostate bed that glowed like the sun on a PSMA PET scan. Fortunately, no scan evidence for distant mets.

For those ten years prior to last June, I never much thought about PCa other than when I saw my urologist and had my PSA tested. Now, it’s exactly as you described—the Black Raven sitting on my shoulder. As I told my RO last week, living with recurrence comes with a daily low level anxiety. It doesn’t keep me up at night, nor outwardly display in any overt way, but it is there as an emotional weight. I’m fortunate, and relieved, that I caught and treated the recurrence so early, but the Black Raven doesn’t care about that.

Went through salvage IMRT last fall, ending in mid November. Just before starting RT, I did an ultra sensitive PSA test which yielded 0.094. The post-RT test yielded 0.086. Good start. The Black Raven isn’t talking as much right now, but he hasn’t flown away either. Just need to get used to him sitting there and get on with it, as anosmic1 said.

@rlpostrp Mind Boggling indeed! And now we know that certain viruses (SARS, Covid, etc) can re-activate these dormant cells and supercharge them, cause them to become more aggressive, or possibly mutate to a castrate resistant cell, so just WTF can you do?😩
Phil