Advice from the Trenches for New Members of this Cursed Club
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.
@hanscasteels
One of the best posts I have read in all the years on MCC.
You touch on all. I could not add one thing to add to all the great information and insights you posted.
I would just add to be your own advocate. My 2 doctors for the past 5 years haven't communicated with each other, and they radically disagree on what treatment I should have now. I'm getting a 3rd opinion next week.
So, study, study, study like your life depended on it, because it does.
In my 10 years of living in the wonderful world of prostate cancer, the @hanscasteels post should be read by every cancer patient. Excellent!! Knowledge is one of your best defenses.
You’d think, after years of training, they might have picked up a little something called collaboration, but alas—here we are, left trying to assemble a cohesive treatment plan from the world’s most disjointed game of “he said, she said.”
And of course you, the patient, must now become a part-time researcher, part-time project manager, and full-time life-or-death decision-maker. Because clearly, a medical degree is optional if you’ve got Google and a notepad.
So yes—study like your life depends on it. Because it does. Apparently, the only person with a vested interest in keeping you alive and informed... is you.
I hope that I, too, have the luck to be alive 10 years from now
HOF post! Should be the forward to a book. I saved reading it for a Sunday morning with coffee because I had a feeling it deserved the proper time and re-reading of certain parts. Perfect.
@hanscasteels Well Said!
As the wife along on this journey I’d suggest always bring someone with you to appointments. I pull out my research, take notes, and sometimes hear things that hubby in the moment misses. It’s difficult but try to continue to do things you enjoy. The waiting to see if the PSA jumps after surgery is an additional emotional toll so I’d just add to anyone that needs to hear it - it’s ok to have a bad day or angry day. Then you rally, because it’s a long journey and every day can be special.
Great recap Hans. I can relate to everything in your post. I was diagnosed last April and wish I had had this insight. Learning the acronyms and the endless tests and options can be overwhelming. I had the same experience after talking to 7 doctors – Surgeons swear by surgery, Radiologist’s like radiation. I guess that is to be expected, but it doesn’t help your decision making when there is no clear-cut answer to what is best for you. I went another direction after finding a clinical study at Mayo Rochester on TULSA PRO. I researched the procedure and sent all my tests, MRIs, etc to them to determine eligibility. They told me I was an ideal candidate for the procedure. What sold me was when the Radiologist told me all other options are on the table if the cancer returns. I also had confidence given it is the Mayo Clinic.
I chose this option after weighing the benefits and risk of each procedure. The surgeon said we can fix the side effects if you get them, but most “fixes” involved more surgery. He also said I was at a higher risk for Peronie’s Disease since I had already had it. I didn’t want to go through that surgery again. The low risk of side effects with TULSA was also a huge selling point.
I know there is no long-term data on my choice, but the early data looks good. My MRI at 6 months looks excellent and my PSA went from 8.6 to .96. I only had 30% of my prostate ablated so I will always show some PSA. I fully concur with this statement in your post: “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.” That is enough for me. I made the decision that was right for me at that point in time. Time will tell if it was the right choice, but I was back to walking 2 miles every morning the day after my procedure. I started having sex again 1 week after the procedure. My hope is TULSA will become a standard option (for those who qualify) as its long-term effectiveness is determined. I hope to say in 20 years, I was a trailblazer for something new.
I know testing is now a part of my life forever. I am OK with that. My wife asked me if it drives me crazy knowing I have to be tested regularly. I told her we are all only 1 test away from our lives’ changing drastically. I just happen to be tested regularly for a known risk.
I have also become a walking Public Service Announcer for PSA tests and for informing people what prostate cancer really involves. So many say if you’re going to get cancer, at least it is that one. They have no idea what decisions and potential lifelong implications the disease requires. And those implications are things most men shy away from sharing. I will continue to speak the hard reality, but also speak hope, humor, and sanity!
I just posted my take on treatment side effects, shunning the brochures, and focusing on reality. I hope that some men, having to make the same impossible choices that we had to make, might benefit from the experiences we encountered, so that the decisions they make are informed (probably more informed), full well knowing that the treatment is only step 1
“…One test away…”
Wow, those three words are all you really need to know about life, right?
Beautiful insight, jcf….
Phil