Connect
A crimson story: My journey with prostate cancer
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
"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.
-
Like -
Helpful -
Hug
4 ReactionsHow many cores in total were taken and how many were positive? Was it a random biopsy or targeted? Did you ever have an MRI?
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.
-
Like -
Helpful -
Hug
1 ReactionI 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.
-
Like -
Helpful -
Hug
4 ReactionsHans. You need to put all your writings into a book. I'd buy it.
@hanscasteels I am so sorry. That is a very regrettable sequence. Thank you for sharing your journey.
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
-
Like -
Helpful -
Hug
3 ReactionsChapter 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.
-
Like -
Helpful -
Hug
3 ReactionsChapter 2: The Biopsy
So, you’ve made it through Chapter 1 — the stage where your PSA numbers raised their little red flag and your doctor furrowed their brow meaningfully before recommending a “biopsy.” You nodded calmly while your internal monologue screamed, “WAIT, THEY’RE STICKING NEEDLES WHERE?” Welcome to Chapter 2: the moment where theoretical anxiety becomes actual pathology. This is the chapter where numbers turn into cells, and cells turn into sobering existential questions like: Am I dying or just slightly marinated in cancer?
Let’s walk through it. Wryly. Cynically. Honestly.
The Biopsy: AKA The Core Sample from Planet Prostate
The standard prostate biopsy is a transrectal ultrasound-guided core needle biopsy, which is just medicalese for “we're going to shove an ultrasound wand up your behind and shoot needles through your rectal wall into your prostate 12 times.” No, that’s not hyperbole. It’s twelve. Sometimes more. They don't call it "saturation" biopsy for nothing. You will be numbed, but don’t let the word “numb” lull you into a false sense of comfort. It’s more like “muffled outrage.”
Each core is sent to pathology. There, a person who has never met you determines how many cores are cancerous, what kind of cancer you have, and just how much you should panic. Or not.
The Results: Gleason Scores, Cribriform Patterns, and Other Mood Killers
Once your prostate has been harvested for samples like it’s a suburban backyard herb garden, the real fun begins: interpreting the results. Here's how to decode what gets handed to you on an unassuming piece of paper that contains the entire plot of your next year.
1. How Many Cores Were Positive?
This is the first number that matters. Let’s say they took 12 samples, and 7 came back positive. That means 7 of the needles hit cancer. This tells us how widespread the cancer might be.
1–2 cores: Might be caught early.
3–6: Medium concern, grab a seat and start researching.
7+: Congratulations, you’ve moved into the “serious conversations” category.
2. The Gleason Score (Now Known as the Grade Group)
Gleason Scores go from 6 to 10. Why not 1 to 10 like the rest of the universe? Because medicine hates simplicity.
Gleason 6 (3+3): Technically cancer, but might be less threatening than a hangnail. Usually monitored.
Gleason 7 (3+4 or 4+3): This is where things get ambiguous. 3+4 is the “least bad” 7; 4+3 means the more aggressive pattern dominates.
Gleason 8–10: You’ve likely got an aggressive tumor. Time to explore active treatment.
Oh, and don’t forget those Grade Groups, which now help confuse patients more efficiently:
Grade Group 1 = Gleason 6
Grade Group 2 = 3+4
Grade Group 3 = 4+3
Grade Group 4 = Gleason 8
Grade Group 5 = Gleason 9–10
Because two numbering systems are better than one, right?
3. Perineural Invasion
This means the cancer is cozying up to your nerve fibers. Not great. It’s been linked to increased risk of spread, but many doctors will say “it’s common” in biopsy results. Translation: “We see it a lot, and we don’t really know what to do about it yet.”
4. Cribriform Patterns
These are the architectural blueprints of a tumor that’s decided to go rogue. Cribriform glands don’t behave. They break out of the prostate and throw cancer parties in the surrounding tissue. If your pathologist mentions this, it’s not something to ignore. You now officially qualify for the "aggressive variant" club, complete with added worry and invitations to longer treatment plans.
What It All Means: Decoding the Doom
This is the point where people tend to stop hearing what the doctor says and start Googling at 3 a.m. Instead of spiraling into digital hypochondria, here’s what to focus on:
PSA alone is not the final word. Biopsy is where the truth begins to peek out, often in unnerving patterns.
Aggressiveness matters more than size. A tiny but aggressive cancer can cause more problems than a larger, indolent one.
This is not a death sentence. But it is a life interruption. A hard fork in the road. It is also the moment where your relationship with time changes. Everything becomes “before the biopsy” and “after the results.”
Now What?
The results will start a cascade: imaging scans (MRI, CT, bone), referrals, treatment debates. You may now be on first-name basis with a urologist, a radiation oncologist, a medical oncologist, and possibly your insurance provider’s automated denial robot.
Here’s what’s not important right now:
Telling everyone everything.
Deciding on a treatment path before you’ve heard your full options.
Blaming yourself, your diet, your stress, or your unfortunate fondness for bacon.
Here’s what is important:
Asking your doctor to explain your Gleason score in plain English.
Getting a copy of the pathology report.
Taking someone with you to appointments.
Understanding that this isn’t about panic, it’s about planning.
Closing Thoughts from the Biopsy Bunker
The biopsy is your initiation into the surreal and slightly bureaucratic world of cancer diagnosis. It’s where things get real, and often a bit surreal. You will be told to stay calm. You will be handed percentages. You may be told “it’s a good cancer to have,” which is a phrase only ever uttered by people who don’t have it.
But here’s the thing: Now you know. And once you know, you can act.
And in this mess of numbers, cells, and probability curves, action — even slow, measured, skeptical action — is better than blind worry. You didn’t ask for this. But now you’re in it. And you’ve just taken the first step toward becoming your own best advocate, with a dry wit and a healthy mistrust of PowerPoint-laden treatment plans.
Next up: Chapter 3 — Staging, Scans, and the Strange Vocabulary of Modern Oncology
(Spoiler: “T3a” is not a Star Wars droid.)
-
Like -
Helpful -
Hug
5 ReactionsChapter 3: Staging, Scans, and the Strange Vocabulary of OncologyIn Which You Are Assigned a Stage, a Letter, a Number, and Possibly a Code NameOnce the biopsy confirms you're officially in the Cancer Club, you're handed over to the next bureaucratic phase: staging. This is where your cancer gets alphabetized, categorized, and ranked like it's applying to university.What Is Staging?Staging answers one basic question: how far has it spread? It uses the TNM system:T = Tumor (how deep it’s dug into the prostate and beyond)N = Nodes (lymph nodes: yay or nay?)M = Metastasis (has it gone sightseeing?)The result is a lovely code — like T3bN1M0 — which makes you sound like a discontinued military drone.Decoding the TNM MatrixT – TumorT1: Too small to feel. Detected by biopsy or imaging.T2: Palpable but still inside the prostate.T3a: Breaking through the capsule.T3b: Into the seminal vesicles.T4: Off to neighboring organs. Bad manners.N – NodesN0: No lymph node spread.N1: It’s found the lymph nodes. Commence quiet swearing.M – MetastasisM0: No spread.M1a: Far-off lymph nodes.M1b: Bones. Prostate cancer’s vacation destination.M1c: Organs. Rare. Dramatic. Not good.The Scans: Your Diagnostic Photo ShootTo determine staging, you're booked for a round of tests:MRI: Determines if it’s escaped the capsule or invaded the vesicles.CT Scan: Scans your torso for lymph involvement or “incidental weirdness.”Bone Scan: Lights up cancer in your skeleton. Often the game-changer.PSMA PET (if available): High-tech bloodhound. Finds what others miss — sometimes too well.Vocabulary Nobody Warned You AboutYou’ll now be fluent in phrases like:Extracapsular extension: It left the building.Seminal vesicle invasion: Now it’s getting adventurous.Perineural invasion: Cancer hanging around nerves, ominously.Lymphadenopathy: Enlarged lymph nodes. Or a panic-inducing typo.Biochemical recurrence: PSA is back. Cue the stress.So What Does My Stage Mean?Stage I–II: Contained. Often curable.Stage III: Locally advanced. Serious, but still treatable.Stage IV: Metastatic. No longer about cure — now about control.But staging is just one piece. Your Gleason score, PSA, age, general health, and sheer stubbornness all matter.One Last Thing: You Are Not Your StageIt’s easy to reduce yourself to “T3b, high-risk,” but don’t. Staging guides treatment — it doesn't dictate your story. There are men with Stage IV who outlive their golf buddies. There are Stage I guys who spend years obsessing.Be informed. Be skeptical. Be annoyingly persistent.Coming Next:Chapter 4: Meeting the Oncology Avengers – Urologist, Radiation Doc, and The Keeper of Hormones(Hint: one of them will recommend a drug that flattens your testosterone and your sense of self.)
-
Like -
Helpful -
Hug
1 Reaction