Advice from the Trenches for New Members of this Cursed Club

Posted by hans_casteels @hanscasteels, Apr 5 12:53pm

So, you’ve just heard the words: prostate cancer. Welcome to the club no one wants to join — there’s no handshake, no jacket, and the dues are paid in bodily fluids and sleepless nights. Let me be the first to say: I’m sorry. And congratulations. You’ve just inherited a lifelong subscription to statistics, acronyms, and the exquisite pleasure of second-guessing every decision you’ll make from here on out.

I’m not a doctor. I’ve just been through the wringer. Biopsy. Bone scan. MRI. Brachytherapy, Catheters, PET scans, MRIs, Radiation, ADT... Too many acronyms to count. And I want to talk to you—not as someone who has it all figured out, but as someone who's had to make the same impossible choices you’re now staring at like a deer in an oncological headlight.

You’ve probably already met a few physicians. You might even like them. Be careful. Liking them can be dangerous — it gives you the illusion that they know what’s best for you. The truth is, ask ten specialists what to do and you’ll get ten different answers, each shaped more by their training, bias, and comfort zone than by your life, your body, or your priorities.

Surgery? Some will say it’s the “gold standard,” like we’re buying jewelry instead of cutting out a body part that happens to sit right next to your bladder, your bowel, and the nerves that make sex something more than a nostalgic memory.

Others will swear by radiation — it’s “non-invasive,” unless you count the slow accumulation of fatigue, rectal drama, and the delightful sensation that your insides have become the set of a post-apocalyptic film. Then there’s brachytherapy, which sounds cute until you’re told they’ll be implanting radioactive seeds into your prostate. Like gardening, but more internal and existential.

And let’s not forget ADT — Androgen Deprivation Therapy. Ah yes, chemical castration with a polite name. Testosterone goes out the window and with it your energy, libido, mental clarity, and sometimes your will to make polite conversation. But hey, at least the cancer hates it too.

So how do you choose? Is this a medical decision or a lifestyle one? Are you trying to survive or to live in a way that still feels like you? And what if the two are at odds? No one tells you that - that survival and quality of life are sometimes reluctant roommates.

Let me give you the only real advice I can.
First, get informed — painfully, obsessively informed — but don’t let that paralyze you. You will read studies. You will encounter survival graphs that make your stomach churn. You’ll discover the charming term “biochemical recurrence” and wonder if you should just skip treatment and take up interpretive dance instead. But you must decide. Not deciding is its own decision, and it favors the cancer.

Second, ask yourself not just, what are the odds I’ll live? but how do I want to live if I do? Are you okay with using a catheter for a while? A long while? Are you prepared for fatigue that makes climbing stairs feel like summiting Everest? What does sexuality mean to you, not as a theory, but as something that connects you to your partner, to yourself? This is not the brochure version of cancer care — this is the unsexy truth. Treatments have side effects, and while most are survivable, some are non-refundable.

Third, accept this truth: You won’t know if you made the right decision. Not right away. Maybe not ever. That’s the cruel trick. The consequences often show up months or years later, long after the doctor has moved on to the next patient, and you’re left wondering if you played the odds well. Sometimes, you only know you chose well because the worst didn’t happen. Sometimes, you still have to tell yourself, I made the best decision I could with the information I had, and that has to be enough.

And that brings up the question that eats away at you in the quiet hours: How do you know if the treatment actually worked?
Short answer? You don’t — not immediately. You wait. You watch. You live.

If you had surgery, your PSA should drop to undetectable. If you went with radiation or brachytherapy, your PSA will fall more slowly, like a cautious stock market. You'll learn terms like “PSA bounce” and “biochemical recurrence” and you’ll start interpreting decimal points the way Wall Street watches interest rates.

Imaging scans may follow if things start creeping up. But there’s no confetti moment. No one high-fives you and says “You’re cured.” Success is quieter than that. It’s measured in stable bloodwork, uneventful checkups, and long stretches of nothing happening. And believe it or not, that’s the goal.

Sometimes, success means still being here — scarred, maybe, changed, definitely — but still here. Still peeing (mostly) on target. Still capable of telling your story to the next guy who needs to hear it.

And last — don’t let this consume your identity. You’re still you. A diagnosis doesn’t rewrite your character. You get to be scared, angry, even sarcastic about the whole damn thing — but don’t let cancer become your whole story. It’s just a chapter, albeit one hell of a long, annoying, and medically expensive chapter.

You will get advice. From doctors. From strangers. From friends who mean well but think a gluten-free diet will shrink tumors. Smile politely. Then go with what feels right to you — not what scares you the least, but what makes sense for your values, your life, your sanity.

You’re not alone. Whatever you decide, it doesn’t define your courage.

Stay sharp. Stay skeptical. And keep your sense of humor — you’re going to need it.

If you’re reading this and you’ve been through your own version of the prostate cancer gauntlet — whether it was surgery, radiation, seeds, ADT, or something else entirely — 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'sus, after all.

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

@graybeard46

This is one of the best posts I’ve seen , where were you last summer when I had to decide , you were spot on in every way .

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I was still kinda blissfully unaware then. And watching urologists stare at their belly button. And stewing as why this couldn’t be addressed sooner, more effectively, perhaps a little more intelligently. And realizing that while this cancer is mine to deal with, I am just a number of thousands going through the same crap

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@tmestanas91

Quality of life
Center of excellence

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Thanks !!

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@hanscasteels

I was still kinda blissfully unaware then. And watching urologists stare at their belly button. And stewing as why this couldn’t be addressed sooner, more effectively, perhaps a little more intelligently. And realizing that while this cancer is mine to deal with, I am just a number of thousands going through the same crap

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This cancer has so many life changing side effects, it’s a big lie that it’s the most curable. It kills you a little at a time , mentally and physically. Hard to be happy when you wake up
In the morning, my friends say well you’re alive aren’t you , my reply is only half of the old me is .

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@brianjarvis

The key to much of this involves early and annual screening which leads (hopefully) to early detection.
Having first heard about PSA testing when I was 40y (in 1995), I started having PSA tests as part of my annual health checkups when I was 45y (in June 2000), and watched my PSA slowly rise each year (1.30, 1.64, 1.79, 1.87, 2.10, 2.60, 2.70, 3.40, 4.00 & 4.20).
So, it wasn’t a big shock to me in April 2012 (at 56y), that my urologist told me that my “blind” biopsy showed low-grade, localized prostate cancer: Gleason 6(3+3); an independent second opinion confirmed this. After 9 years on active surveillance, I had proton radiation treatments during April-May 2021. Today, it’s all just a passing memory…..
To date, I’ve had 63 PSA tests (many including testosterone, CBC, and CMP tests), 4 MRIs, 4 biopsies, 2 CT scans, 2 bone scans, 2 DEXA scans, 2 biomarker tests (OncoTypeDx and Prolaris). Each provides necessary diagnostic information to guide my next steps. So far, so good.
What I found was that decision-making for my prostate cancer has been easier than for some other medical issues I’ve had —> for my two knee surgeries (in 1995 and 2018) and one back surgery (in 2012), I was in such excruciating pain that there was no time to research, ask questions, or get second opinions.
On the other hand, for the cholecystectomy (gall bladder removal) that I had 1-1/2 years ago, my prostate cancer experience actually provided me a great benefit. Even though I didn’t have surgery to treat my prostate cancer (I wound up having proton radiation), I had learned of the need to seek out a surgeon who had done a thousand robotic surgeries - and I did. The gallbladder surgery and recovery went as well as expected.
For my prostate cancer treatment, the SpaceOAR Vue injection went as expected (ouch!); the proton radiation treatments went as planned (uneventful); the ADT experience was just as I had been told — “ramp up your weightlifting and cardio in order to minimize/avoid the side-effects of low testosterone.” I had mild, tolerable (mostly annoying) ADT side-effects - even with a testosterone level that went down to 3.0 ng/dL.
So far, this hasn’t been the worst journey I’ve experienced. (My older brother was diagnosed with pancreatic cancer in early August 2024; he died of the disease in late October 2024.)
The way this has changed me is that I saw the need to study and become a “student of prostate cancer.” So far, I think the decisions I’ve made have been right on track (no differently than for any other illness or injury that I’ve ever had) and my numbers remain nominal.
Take the time to learn all you can and treat the disease appropriately for the diagnosis.

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Your poor brother…he never had a chance. We, on the other hand, have many, many opportunities to put up some kind of fight and many times we actually win the battle.

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@heavyphil

Your poor brother…he never had a chance. We, on the other hand, have many, many opportunities to put up some kind of fight and many times we actually win the battle.

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Yes, his was a quick, cruel death. With me being diagnosed with prostate cancer 13 years ago, we thought that I might succumb first. When actually, with prostate cancer we usually win.

Of the top diagnosed cancers in men - pancreas, brain, esophagus, liver, lung, leukemia, colon, non-hodgkins lymphoma, oral, bladder, kidney, prostate, and skin, prostate cancer has the second lowest mortality rate.

In fact, the leading cause of men who have been treated for prostate cancer is cardiovascular disease.

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@brianjarvis

Yes, his was a quick, cruel death. With me being diagnosed with prostate cancer 13 years ago, we thought that I might succumb first. When actually, with prostate cancer we usually win.

Of the top diagnosed cancers in men - pancreas, brain, esophagus, liver, lung, leukemia, colon, non-hodgkins lymphoma, oral, bladder, kidney, prostate, and skin, prostate cancer has the second lowest mortality rate.

In fact, the leading cause of men who have been treated for prostate cancer is cardiovascular disease.

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Yup, all that ADT, which we desperately need to survive, but ultimately causes our demise.
But it gives us a chance and more than that is just gravy.
Phil

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