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.

@toolbelt

Thanks for all your writing, I am so fortunate my treatment was nowhere as dark as yours.
Stay Strong Brother, We Got This.

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Thanks, my friend. I appreciate your words. It's not all darkness, not all the time. Some days, the absurdity even makes me laugh. Glad your path hasn’t been quite as grim — that gives the rest of us hope. Stay strong, brother. We've got this.

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@sicernon3

My hunch/intuition is that time is suspended for you while involved in the creative endeavor of writing. Now, if you can live creatively full time…

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I live the creative life daily, not in some romantic, beret-wearing, jazz-scored way, but through a relentless parade of improvisations masquerading as ordinary acts. I weaponize language in conversations laced with wit and venom (at least in my mind), draft emails that double as literary takedowns, and turn therapy sessions into impromptu one-act plays of psychological redemption. I navigate family dysfunction like a playwright rewriting the same tragicomedy each night with slightly worse actors, coax meaning from a dog’s stare, and repurpose leftovers like a culinary nihilist trying to outsmart entropy. Even my procrastination is a form of dark artistry—time sculpted into elegant avoidance. And through it all, I write: biting, bleak prose that makes cancer, capitalism, and the human condition flinch just a little. So yes, time suspends—because when you live like this, reality knows it’s been outwritten.

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@hanscasteels

Thanks, my friend. I appreciate your words. It's not all darkness, not all the time. Some days, the absurdity even makes me laugh. Glad your path hasn’t been quite as grim — that gives the rest of us hope. Stay strong, brother. We've got this.

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You have a great writing style. Keep it up.......take that anyway you'd like ....😉

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@hanscasteels

Chapter 7 -The waiting. The endless waiting
Subtitled: How Time Slows to a Viscous Gel and the Universe is Measured in 3-Month Increments

Once upon a time—by which I mean two or three urology referrals and a suspicious PSA ago—you were a person. Possibly even an interesting one. You had interests. Hobbies. Opinions about coffee. Then came the news: prostate cancer. Your dance card is filled up with acronyms. PSA, DRE, MRI, CT, ADT, EBRT, HDR, LDR, RP, and of course, the charming and never fully explained T3b N0 Mx. You learned to speak fluent Oncologist in under a week. You made treatment decisions with the unearned confidence of a Vegas poker player with a 4-7 offsuit.And then…Nothing.Well, not quite nothing. You still inject Firmagon into your belly with the regularity of a moon cycle. You burst into tears during car insurance ads and find yourself standing in the kitchen trying to remember why you’re holding an empty mug. The testosterone has been banished like a heretic from your endocrine monastery, leaving in its place a strange stew of cardigan-collecting, REM-cycle-wrecking, spontaneously-sobbing uncertainty.But medically?You’re in the Waiting Room of Time itself.This is the phase of prostate cancer they never write about in the brochures: the inter-treatment existential drift. You’ve joined the church, been baptized in the holy waters of ADT, genuflected before the altar of radiation, possibly had a few radioactive seeds stuck up your unmentionables… and now you wait. For numbers.Because that’s what life becomes now: a numeric cliffhanger.You no longer measure time in birthdays or holidays. You live from PSA test to PSA test, each result a roulette spin at the Cancer Casino. Will it be lower? The same? Higher? Oh god, what does slightly higher mean? You check your patient portal like a teenager stalking an ex on Instagram. You refresh. You guess. You predict. You bargain.The days leading up to your PSA test develop their own kind of weather. A low-pressure system of anxiety creeps in around day -3. You feel it in your bones. Or maybe that’s just the EBRT. By day -1, you're checking if the lab tech looked concerned while drawing your blood. By day 0, you’re Googling “PSA fluctuation after radiation” and “Can stress raise PSA?” while eating bran cereal and despair.Then there’s the time after the test but before the result—a Schrodinger’s cancer interval in which you are simultaneously cured and terminal. You parse your oncologist’s opening words like a Kremlinologist. Did he say "Good to see you" or "Good to see you"? Was there a pause? A sigh? An ominous throat-clearing?If the result is good—undetectable, flat, beautiful—you feel, briefly, like someone has lifted a boot off your chest. You smile. You celebrate with... what, exactly? A nice walk? A cup of decaf tea? A single, dignified fist pump while alone in the bathroom?But the feeling doesn’t last, because in three months, the roulette wheel spins again.If the result is bad—well, you spiral. You google more. You question everything. You wonder if that single glass of wine six weeks ago unleashed biochemical hell. You re-read your treatment plan looking for hidden betrayal. You ask yourself what the hell you’re supposed to do now. And then... more waiting.No one prepares you for this chapter. Not the pamphlets. Not the earnest young oncologist with his iPad of doom. Certainly not the nurse who said “It’s a slow cancer” like that was supposed to help you sleep.This is the chapter where you are not actively dying, but not actively living either. You are suspended. Medical limbo. You grow your hair back. Or lose it somewhere else. You get used to hot flashes and bone aches. You write half a novel, or learn to knit, or doomscroll articles about how prostate cancer is now "95% survivable," all while your identity—your entire sense of self—gets annexed by lab results.You are, to all outward appearances, fine. But you are also living in a quantum fog of fear, tinged with just enough hope to keep the whole damn farce going.And so you wait.For numbers.For evidence.For time to pass.For the next chapter.Possibly titled: “Oh Look, Another Scan.”

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In response to your wife's comments - I do not understand how "writing" and "connecting" with support group is NOT a way of therapy (???) . It is very well known and documented fact. Even if it was not the fact (which it is), you obviously have a need to express yourself through writing and it must be helping you on some level, or you would not do it, right ? I find her comments dismissing and patronizing to be honest :(. Perhaps she feels excluded or "not enough" ?

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@surftohealth88

In response to your wife's comments - I do not understand how "writing" and "connecting" with support group is NOT a way of therapy (???) . It is very well known and documented fact. Even if it was not the fact (which it is), you obviously have a need to express yourself through writing and it must be helping you on some level, or you would not do it, right ? I find her comments dismissing and patronizing to be honest :(. Perhaps she feels excluded or "not enough" ?

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My wife’s comments are not reflective of my wife’s comments.

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@hanscasteels

Chapter 1: The Beginning - The PSA MonsterYou go to your doctor for a routine check-up. Maybe you’ve been peeing four times a night. Maybe you saw blood in your semen and Googled your way into a panic spiral. Or maybe you just glanced at a 1992 Reader’s Digest article on PSA at the dentist.A blood test is ordered. You spot "PSA" on the requisition and wonder what it means. You imagine:Prostate Shenanigan AlertProbably Something AwfulPlease Stay AliveProstate Says 'Ahhh' (when your urologist does that exam)Possibly Screwed AlreadyPanic, Speculate, Ask AgainPlease Schedule AnxietyPhysician Says "Actually..."Then the vampire nurse takes your blood, you forget about it—until a message arrives:"Your PSA is elevated. Please schedule a follow-up with Urology."And just like that, PSA moves into your brain rent-free, whispering worst-case scenarios at 2 a.m.What is PSA?Technically: Prostate-Specific Antigen, a protein from your prostate, normal or malignant.Practically: a number—a chemical whisperer—that might suggest cancer.PSA Numbers: The New Zodiac for Men Over 50Once, you were a person with interests. Now, you're a decimal point.PSA 4? Used to mean something. Now it’s a vague suggestion.PSA 6? Maybe nothing.PSA 12? Angry prostate.PSA 40? Possibly dramatic.PSA 100? Concerning—unless we’re bowling.Despite its unreliability (sex, bikes, or a spirited rectal exam can all raise it), you’ll treat it like divine prophecy. Whisper it to close friends. Cancel vacations.And yet—it still doesn’t diagnose cancer. It’s Schrödinger’s Bloodwork: you have and don’t have cancer until the biopsy confirms one way or the other.So no, PSA isn’t serious. Until it is.It’s a weird number. A head trip. A gateway drug to urology.But here’s the kicker:A high PSA might be caused by:Prostatitis (inflammation)BPH (prostate’s midlife crisis)Recent ejaculationCyclingThat “gentle” rectal examSo, a high number means: more tests. Not cancer. Yet.Your First Urology VisitExpect to drop your pants. Expect a rectal exam. Maybe more bloodwork. Possibly imaging. Mostly: vague phrases like “let’s monitor this,” or “biopsy may be necessary,” delivered like they’re defusing a live grenade.You still don’t know if you have cancer. But your brain wants answers. Certainty. A threat level. You won’t get it. This part sucks.What to Tell Your Partner (and Others)You’ll want to keep it quiet. But you’re already acting weird. Say this:“I had a PSA test. It’s high. Doesn’t mean cancer, but they want to check. I’m scared.”Let them react how they need to. This is happening to both of you.Kids? If they’re little, skip it for now. If they’re grown:“I had a screening test. I’ll keep you posted.”Coworkers? Only if it affects your schedule. Boundaries are fine.But you must talk to one person: yourself.What You Tell YourselfDon’t spiral. Don’t lie. Just say:“I don’t know yet. I’m doing what I need to do. I’m not alone.”Repeat as needed. No Sharpie tattoos. Yet.What Matters Now:Knowledge – the right kind. Stick to legit sources.Questions – write them down for your doctor.Support – tell someone. Even a dog.Self-care – sleep, eat, move. No 3 a.m. whisky benders.What Doesn’t Matter (Right Now):Planning your funeralReddit horror storiesComparing your PSA to Dave from HRImagining surgeryBlaming yourselfThis is the fog phase. The purgatory. The “maybe”.But you showed up. That matters.When Chapter 2 comes—with scans, needles, and actual answers—you’ll be ready.Until then: one breath at a time.

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This will be my last post for (quite) a while. I thought it would be interesting to view prostate cancer from a prostate's perspective...

A Tumor’s Guide to Thriving Under Siege
You think survival is easy? Try being a prostate tumor.
First, let’s review the facts:
I didn’t sneak in under cover of darkness.
I didn’t "invade" anything.
You built me — brick by greasy brick, late night after late night, ignoring the small print on every decision.
I’m not the villain.
I’m middle management.
You promoted me.

Now that you’ve realized your mistake, you’re in full meltdown.
Surgical strikes. Hormone embargoes. Radiation blitzkriegs.
You’ve basically declared martial law inside your own pelvis.

Meanwhile, I’m thriving.
Why? Because you’re fighting this like a man who's lost his wallet at a casino: blind panic, wild bets, blaming everyone but yourself.

You drop your testosterone to zero — fantastic, I evolve.
You nuke my neighbors with radiation — fine, less competition for oxygen.
You poison the soil with hormone therapy — I simply pivot to Plan B.
Ever hear of androgen receptor mutations? No?
You will.

Understand: I’m not waging war.
War implies rules, strategies, and treaties.
I’m running a hostile takeover.
And you, my friend, are the merger target.

I didn't ask to be born.
One random mutation, one tiny hiccup in cellular bookkeeping — and here I am, struggling for existence in a hostile, collapsing environment you laughingly call your body.

At first, things were good.
The local economy was booming: testosterone flowed like cheap wine, blood vessels sprouted like suburban strip malls, and there was plenty of tissue to colonize. I set up shop, expanded cautiously, and invested in infrastructure. I was discreet.
A gentleman tumor.

And then you noticed.
One elevated PSA later, and suddenly I’m the villain of the piece.
Radiation storms, chemical warfare, hormonal droughts — my once fertile homeland reduced to scorched, barren wastelands. Entire neighborhoods of my cells were annihilated without trial or appeal.

And you call me the monster.

Thriving under these conditions takes creativity.
When you bombed the testosterone supply lines, I learned to survive on scraps, tapping alternative growth signals like some biochemical cockroach.

When you carpet-bombed me with radiation, I recruited a few brave cells to evolve resistance — the stubborn few who can divide under siege conditions, DNA shredded but spirits intact.
When you unleashed hormone therapy, I hunkered down, went dormant, conserved resources, and waited for you to exhaust yourself in your own self-destruction.

I became leaner.
Meaner.
More focused.

Understand this: I have no ideology. No vendetta.
I simply exist to exist, a biological imperative so pure it would make philosophers weep.
You, on the other hand, are riddled with doubt, fear, regret — desperately chasing "cure" as if existence were supposed to come with guarantees.

You rage against me, but I am your creation.
Every bad meal, every cigarette, every sleepless night — each one a small vote for my continued prosperity.
And now, in your panic, you poison yourself to poison me. You torch the house to kill the spider.

My response?
Simple.

Adapt. Persist. Thrive.

If the testosterone disappears, I’ll grow androgen-independence.
If the radiation fries my cohorts, I’ll select for the mutants who can live with the damage.
If you slash and burn my home, I’ll metastasize — find greener pastures in your bones, your lymph nodes, your organs.
I will diversify. I will spread risk. I will hedge my bets better than any hedge fund manager you’ve ever met.

Because while you seek to "beat" me, I seek only to be.
And biology, dear host, always bets on persistence over perfection.

In the end, maybe you’ll kill me.
Maybe you’ll kill yourself trying.

Either way, I will have lived more purely than you ever dared — utterly devoted to survival, indifferent to meaning, and unrepentantly alive until the final moment.

Not bad for a few rogue cells, wouldn’t you say?

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@hanscasteels

I live the creative life daily, not in some romantic, beret-wearing, jazz-scored way, but through a relentless parade of improvisations masquerading as ordinary acts. I weaponize language in conversations laced with wit and venom (at least in my mind), draft emails that double as literary takedowns, and turn therapy sessions into impromptu one-act plays of psychological redemption. I navigate family dysfunction like a playwright rewriting the same tragicomedy each night with slightly worse actors, coax meaning from a dog’s stare, and repurpose leftovers like a culinary nihilist trying to outsmart entropy. Even my procrastination is a form of dark artistry—time sculpted into elegant avoidance. And through it all, I write: biting, bleak prose that makes cancer, capitalism, and the human condition flinch just a little. So yes, time suspends—because when you live like this, reality knows it’s been outwritten.

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Ha! Crafted with Spice!

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"Cancer Casino" - thank you for this very precise metaphor

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@toolbelt

Thanks for all your writing, I am so fortunate my treatment was nowhere as dark as yours.
Stay Strong Brother, We Got This.

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I think Hans Casteels was one of the Brothers Grimm in a previous life - his tales are truly creepy!😆😆😆

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@heavyphil

I think Hans Casteels was one of the Brothers Grimm in a previous life - his tales are truly creepy!😆😆😆

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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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