A crimson story

Posted by hans_casteels @hanscasteels, 6 days ago

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.

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

I can relate 100 %...

My husband did have MRI and regular PSA screening but that meant nothing without correct interpretations and correct frequency of testing. In the USA there is recommended protocol of doing MRI and biopsy every 2-3 years once gleason 3+3 was detected. Our urologist waited 6 years to repeat biopsy and only after second lesion appeared on MRI. That allowed cancer to grow from 3+3 to 4+3 with cribriform and IDC-P presentation and putting my husband in high risk category. If biopsy was done every 2-3 years 3+4 would be caught on time and treatment would be curative. Now tough luck whit that scenario :(.

So yeah ... incompetence and overconfidence are as dangerous as cancer itself.

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How many cores in total were taken and how many were positive? Was it a random biopsy or targeted? Did you ever have an MRI?

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@ozelli

How many cores in total were taken and how many were positive? Was it a random biopsy or targeted? Did you ever have an MRI?

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It was a random biopsy, a TRUS guided affair. 7 out of 12 cores were positive, 2 cores had 10 to 20% Gleason 4. The rest all 3. I never had an MRI.

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I agree with you. In hindsight wish I would have researched more. Hubby PSA 7, next test 5...urologist....at least it went down. Next test 14...urologist, no big deal, even if it's cancer it's only stage 1. After biopsy and MRI Gleason 8, stage t3b. Yada, Yada. This was all over a year's span! Maybe, had we been more informed, cancer would not have spread to seminal vesicles and created cribaform. Treatment...26 radiation sessions, ADT 3 years elegard, zytiga, stopped after 11 months due to heart attack. Last ADT shot in July...then sweat out PSA tests forever, I guess.

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Hans. You need to put all your writings into a book. I'd buy it.

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@hanscasteels I am so sorry. That is a very regrettable sequence. Thank you for sharing your journey.

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I agree with stew80, you are quite the wordsmith, the thoughts, descriptions and such hit the mark on everything I and others on this site have been through. I’m going to send a couple of your posts to my urologist, my fourth one in my journey.
Post on my brother, your words inspire me to continue down this rabbit hole of confusion

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