Welcome to Prostate Cancer. A Playbook for the un-initiated

Posted by hans_casteels @hanscasteels, Apr 4 10:02am

It always begins harmlessly. A checkup. A blood draw. Then the call: “Your PSA is a bit elevated.” Calm voice, a hint of tension. Like a mechanic saying, “Your brakes are fine—just avoid stopping.”

And just like that, you’ve joined the ranks. Not sick, not well. Schrödinger’s prostate.

So, there you are. Sixty-something, maybe seventy. You’ve beaten cholesterol, survived your kids’ teenage years, possibly even learned how to use your smartphone without rage. You’re doing okay. Then one day, a routine blood test reveals that your PSA—the mysterious acronym that no one cared about until they hit middle age—is high. Elevated, they say, as if your prostate just got promoted.

You pretend to take it in stride. After all, you’re a grown man. You’ve had colonoscopies. You’ve paid taxes. You’ve seen things. But there’s a quiet little thud in your chest. And so, off you go, down the rabbit hole of polite waiting rooms and too-cheerful receptionists. Then comes the DRE—digital rectal exam, not a forgotten rapper. You smile weakly while the doctor gets... acquainted. There’s nodding. There’s hmm-ing. There’s the word "suspicious," which you usually associate with casseroles at church potlucks, not your anatomy.

Next stop: the biopsy. Twelve tiny needles. Right into your prostate. You’re told it’s quick. You’re told it’s tolerable. They forget to mention the sound. Oh, the sound. Like staples being fired into a sponge, only the sponge is you. Afterward, you walk gingerly to the car and wonder when exactly your body stopped being yours and became public domain.

The results come in: you’ve got prostate cancer. Not the "panic immediately and buy a sports car" kind, but not the "ignore it and live forever" variety either. Something in the middle. The kind where your urologist starts throwing around Gleason scores like he's calling a horse race. Three plus four equals seven. No, not good, not terrible, but enough to complicate your next few years. There’s mention of perineural invasion, which sounds like a Cold War operation, and something called cribriform patterns, which you pretend to understand so you don’t seem like a dullard. You nod sagely and then go home and Google everything until your eyeballs dry out.

Now comes the game show portion of the journey: “Choose Your Treatment.” Behind Door Number One is surgery—radical prostatectomy. They’ll remove your prostate with robotic arms, like it’s a claw machine at a carnival. It’s efficient, precise, and comes with a charming assortment of potential lifelong side effects. Door Number Two is radiation—either external beam or brachytherapy, depending on how much time you’d like to spend with your pants off in a room full of expensive machines. This one lets you keep your prostate but fries it like an overcooked steak. And behind Door Number Three? Hormone therapy. Also known as chemical castration. Or, as your oncologist will call it with a straight face, "androgen deprivation therapy." You won’t die, but you will become a hot, bloated, forgetful version of yourself. Congratulations, you’re going through menopause, only without the support groups and candle-scented self-care products.

Making the choice is the worst part. It’s not like choosing between chocolate or vanilla. It’s like choosing between blindfolded surgery, slow radiation creep, or chemically induced identity crisis. Your doctors will tell you it’s your decision. Which is polite-speak for “If this goes badly, don’t come back yelling at us.” You’ll talk to your family. Some will say "get it out." Others will say "don’t touch it." Everyone means well. No one knows what the hell they’re talking about.

Eventually, you decide. Maybe you go with surgery. Maybe radiation with a little ADT on the side, like a grim combo meal. The treatments begin. You’re poked, scanned, injected, catheterized, told to drink water and hold it, told to empty your bowels, told to wait, told not to worry. You begin measuring your life in milliliters and blood draws. You make friends with technicians who’ve seen your backside more than your wife has in recent years.

There will be side effects. Some will arrive immediately—fatigue that feels like you’ve been hit by a polite, well-dressed truck. Others take their time, like the slow return of high school acne, only on your soul. If you’ve had hormone therapy, you may find yourself weeping during insurance commercials and forgetting where you put your dignity. Sex becomes... theoretical. Erections are less a function and more a rumor. You’ll hear phrases like “nerve regeneration” and “sexual rehabilitation” and feel like a failed science experiment.

Eventually, the treatment ends. Or seems to. You’re not cured—you’re “monitored.” Every few months, your PSA gets tested. It becomes your new horoscope. Is it rising? Falling? Holding steady? You wait for the call. You always wait for the call.

Life goes on. Sort of. You learn to laugh about it. Because the alternative is brooding, and frankly, you’re too tired for that. You get used to your new normal—less testosterone, more caution, a drawer full of pills, and a renewed interest in soft cushions.

You join the tribe of men who’ve been there, nodding solemnly in urology waiting rooms, sharing tips about incontinence pads and sneaky hot flashes. You become a reluctant sage, offering cryptic wisdom to the newly diagnosed like some sort of leaking Yoda.

And if you're lucky—really lucky—you live long enough to complain about all of it with some measure of pride, bitterness, and the enduring hope that one day, someone will invent a treatment that doesn’t involve needles, impotence, or explaining to strangers why you carry spare underwear in your glovebox.

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

Hans: This made me smile and laugh this morning. It is an awesome description of the journey. I agree that making the choice was the worst. I told my wife at the time, “I wish this was a broken arm where you have one treatment - a cast”
Keep up the good work!

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With times and dates changed this could be every prostrate cancer victims story. Good read!

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Totally agree with jcf58! I find myself going right to the portal each morning to read your latest entry! Thanks!

GSD

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In reply to @heavyphil "Exactly…" + (show)
@heavyphil

Exactly…

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Hans, You can see how much your presence on the forum has lifted all our spirits and helped us forget our troubles.
Perhaps the simple fickle finger of fate - and not the urologists index finger - has delivered you to our proverbial doorstep? 🫣

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@heavyphil

Aw, c’mon man, don’t put it like that!! You make me sound worse than THEM!😆
I am completely on your side and I have no desire to make it sound like you should take your bitter medicine and be thankful for it - no way!
I simply point out that even with all the bells and expensive whistles we have here in the US, your treatment would probably have been identical to what you are getting now in Canada.
Phil

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I gave you a virtual hug. I sensed you needed it. Thank heavens you’re not making me take my bitter medicine — just thoughtfully reminding me that it tastes the same on both sides of the border.

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@heavyphil

Hans, You can see how much your presence on the forum has lifted all our spirits and helped us forget our troubles.
Perhaps the simple fickle finger of fate - and not the urologists index finger - has delivered you to our proverbial doorstep? 🫣

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The fickle finger of fate—far more whimsical and less gloved than the urologist’s. And yet, here I am, Hans, apparently the Prozac in this prostate saga, the levity in our lamentations, the gallows-humor gremlin that fate wedged between our symptoms and sanity.

It’s touching, really. Who knew my presence would serve as emotional duct tape for this brave band of biopsy veterans? I'm just glad it's my wit that's probing deep into your souls and not the urologist’s knuckle.

Writing keeps my mind off this crap. I mostly do it to keep myself busy and not get in my wife's way. We've all been through our own version of the prostate cancer gauntlet — whether it was surgery, radiation, seeds, ADT, or something else entirely — so I invite you to add your voice. No two paths are exactly alike, and your perspective might be the missing piece someone else desperately needs. The goal here isn’t perfection or consensus — it’s honesty. It’s building a collective record, written not in medical jargon but in lived experience. Because the next guy to hear those three words — You have cancer — deserves more than just a pamphlet and a pat on the back, he deserves a map drawn by those of us who’ve walked the trail, blistered feet and all. And that's us, after all.

Carry on, comrades—together we laugh in the face of side effects... mostly because we're too dizzy to stand up straight.

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Hans,
Thank you for your well written story about the journey from diagnosis to treatment as well as the decision making and the consequences of each decision. I can totally relate to every thing you said. I had a Gleason 9 and Grade 5 post-op pathology after my NVRP. Still dealing with incontinence but it seems to be getting better or I am getting use to it. My 6 week PSA was < .1 and is considered undetectable. I know that I have a high likelihood of recurrence and my life after prostatectomy is changed forever. I remain hopeful but realistic as to my prognosis but so very much appreciate you summarizing for all of us the playbook for the un-informed. Bravo.

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@hmishkind

Hans,
Thank you for your well written story about the journey from diagnosis to treatment as well as the decision making and the consequences of each decision. I can totally relate to every thing you said. I had a Gleason 9 and Grade 5 post-op pathology after my NVRP. Still dealing with incontinence but it seems to be getting better or I am getting use to it. My 6 week PSA was < .1 and is considered undetectable. I know that I have a high likelihood of recurrence and my life after prostatectomy is changed forever. I remain hopeful but realistic as to my prognosis but so very much appreciate you summarizing for all of us the playbook for the un-informed. Bravo.

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Correction to my post. NSRP not NVRP.

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@hmishkind

Hans,
Thank you for your well written story about the journey from diagnosis to treatment as well as the decision making and the consequences of each decision. I can totally relate to every thing you said. I had a Gleason 9 and Grade 5 post-op pathology after my NVRP. Still dealing with incontinence but it seems to be getting better or I am getting use to it. My 6 week PSA was < .1 and is considered undetectable. I know that I have a high likelihood of recurrence and my life after prostatectomy is changed forever. I remain hopeful but realistic as to my prognosis but so very much appreciate you summarizing for all of us the playbook for the un-informed. Bravo.

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It would be a tragedy if our collective wisdom wouldn’t serve as a point of reference, perhaps a point of assurance, to the unwitting next in line men.

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