A crimson story: My journey with prostate cancer

Posted by hans_casteels @hanscasteels, Apr 16 7:37pm

I was asked by someone in this forum whether I would care to give some insight into my prostate cancer journey.

The Crimson Clue: A Prostate Odyssey

It began not with a scream but a whisper. In 2008, while minding my own post-coital business, I noticed that my semen—normally the color of indifference—was tinged with blood. Aesthetic? Perhaps. Concerning? Definitely. My physician, however, reacted with the professional urgency of a man told the photocopier was out of paper.

"Ah," he said, with the smug satisfaction of someone who had solved a crossword clue, "probably the baby aspirin. Maybe stop taking it."

Mystery solved. Case closed. Medical system triumphant. Waterloo, where I happened to be living at the time, continued its snow-drenched denial of my subtle descent into oncology.

Years passed. Sperm returned to its less theatrical shade. Even though… sperm volumes continued to decline to negligible volumes, another sign that should have been considered, but wasn’t. No one thought about prostates. Until I found myself in an airport somewhere, imprisoned between flights and existential fatigue, flipping through a health magazine that casually mentioned PSA testing. A footnote. A curiosity. But it stuck.

So, in 2018, I asked my doctor for a PSA test. The result came back as a calm, reassuring 1.0. Low enough to make doctors smirk condescendingly and suggest I go live my best life. I was referred to a urologist, because that’s the thing you do when you’re both cautious and bored.

The man performed a DRE (Digital Rectal Exam, not to be confused with a polite handshake) and pronounced everything “perfectly normal.” No lumps, no bumps, no drama. “See you in a few years,” he said, probably before lighting a cigar and billing my insurance.

Then came 2024. PSA: 26.7.

For context, that’s not a “we should keep an eye on this” level. That’s a “why are you still sitting here and not on a gurney?” level. But our friend, the urologist, gazed upon this Everest of a PSA and said—without irony—“There’s nothing wrong with your prostate.”

It was at this point I began to realize the man was either deeply incompetent or auditioning for a role in a Kafka novel.

It took my insistence—again—to push for more than finger-wagging and placebo reassurance. A biopsy, finally, revealed the enemy: prostate cancer, Gleason 3+4=7. Cribriform glands, perineural invasion, a little architectural flair to go with the malignancy. And a realization that this thing had likely been squatting in my prostate for a decade, undisturbed, unchallenged, and medically underestimated.

So, on to treatment: monthly Firmagon injections, which turned my body into a hormonal wasteland. Then came brachytherapy in February 2025—a process that involved radioactive seeds being embedded in me like I was some kind of human chia pet. External beam radiation followed, five days a week, each session a performance in the Theatre of Futility.

Side effects were plentiful: dizziness, hot flashes, breathlessness, a sense of existential farce. But what lingered most was the growing file of “what ifs.”

And now, with the clarity of hindsight sharpened by radiation and pharmaceuticals, I realize what I should have asked:

I should have asked why no imaging was done in 2008 when I presented with blood in my semen—a symptom more ominous than aspirin-induced nosebleeds, yet treated with less concern. I should have asked why we weren’t doing routine digital exams in my 50s, given my age and symptoms. I should have asked what my baseline PSA was back then—had anyone bothered to establish one. I should have asked why we were relying on a DRE alone, as if the human finger were still the gold standard in the era of multiparametric MRI. I should have asked why, with a PSA rising into the double digits, we weren’t immediately biopsying, scanning, staging—doing anything, really, other than muttering “wait and see.” I should have asked whether cribriform patterns carried worse outcomes and if treatment should be escalated accordingly. I should have asked if long-term androgen deprivation could backfire by selecting for more aggressive variants in a low-testosterone environment.

Instead, I trusted. A doctor said it was nothing, and I mistook confidence for competence. I mistook calm for clarity. I mistook protocol for protection.

But here we are. Mid-2025. Not dead. “Terminally stable,” as I like to call it. Or as the oncologist euphemistically puts it, “responding well to treatment”—which roughly translates to, “still paying bills.”

This is not just a tale of cancer. It’s a fable about the peril of passivity, the comedy of credentialed incompetence, and the need to sometimes be your own bloody advocate—literally.

Turns out the most dangerous growth wasn’t the cancer—it was the blind confidence of the specialists.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Phew! Nailed the sentiment and the system called health-care. Thanks again, @hanscasteels. And I hope you will explain why you have had a last post for a while - or I hope to come upon an understanding of such.

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@hanscasteels

Creepy? Compared to what — the sanitized fairy tales where children casually survive wolves and witches without a scratch? I'm just restoring the original realism.

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Absolutely Hans, creepy as hell, ergo my compliments! Please let’s not forget that there is always murder and mayhem in these fairy tales as they were originally written. Nothing casual about Hansel and Gretel pushing a witch into a burning oven or sweet little billy goats being eaten by a troll!
In The original, Little Red Riding hood and her grandmother are eaten by the wolf, who is later slit open by a hunter, thus freeing them.
Saying these tales are ‘casual’ is like one of your pamphlets describing robotic surgery as ‘non- invasive’🤣🤣.
None of us who get diagnosed with cancer are gonna slip away unscathed…
Phil

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@dpfbanks

Phew! Nailed the sentiment and the system called health-care. Thanks again, @hanscasteels. And I hope you will explain why you have had a last post for a while - or I hope to come upon an understanding of such.

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I was told that some people on this forum complained.

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@hanscasteels

Creepy? Compared to what — the sanitized fairy tales where children casually survive wolves and witches without a scratch? I'm just restoring the original realism.

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I have often thought and wondered that PC diagnosis and treatment is just part of the "Grand Plan" regarding PC. "Wait and see" "We will just keep an I on it" You are too young for a PSA test" you have no family history of PC. " DRE shows nothing" Blood in semen? probably just that baby aspirin" On the QT "we will just let it go" so we can then proceed with those extensive and $$$ surgeries and other mostly futile life ruining treatments. Don't want to kill the goose to quickly,just keep those insurance checks coming. Ya Know....

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