A guided tour to the real conundrum of treatment choices

Posted by hans_casteels @hanscasteels, 2 days ago

So, you’ve been diagnosed with prostate cancer. Congratulations. You’ve now entered one of the most exclusive clubs in the aging male body horror genre. It’s like winning the world’s worst lottery—except the prize isn’t money, it’s a buffet of equally disturbing treatment options and the chance to slowly lose all sense of normalcy. Please keep your arms and sense of masculinity inside the vehicle at all times.

It all starts innocently enough: a blood test, a slightly elevated PSA, maybe a digital rectal exam from someone who claims, without a hint of irony, that it’s “routine.” Then come the scans, the MRI, and the infamous biopsy, where a professional stranger jabs your prostate with what feels like a medieval weapon while chirping, “You’ll just feel a little pressure.” Sure. And childbirth is just a tickle. Eventually, a result arrives: cancer. Not “you might want to keep an eye on this” cancer, but full-fledged, “time to make life-altering decisions with wildly conflicting information and absolutely no clear answer” cancer.

And now, the real game begins: choosing your treatment. Or more accurately, choosing your punishment. Because each option is lovingly designed to cure you in the most creatively inconvenient way possible. First, there’s “active surveillance,” which sounds relaxing—like the cancer equivalent of sitting on a porch with a shotgun. You’ll be poked, scanned, and biopsied on schedule, all while pretending that the malignant cells inside your body are just chilling and not planning a coup. Your reward for this strategy is waking up every few months in a cold sweat wondering if you’ve made a fatal mistake by… doing nothing.

If passivity isn’t your thing, you can always go full alpha and have the whole damn prostate cut out. Radical prostatectomy is the go-to option for men who believe that no medical issue can’t be solved with a good old-fashioned amputation. Just rip it out. Problem solved. Until, of course, you discover that the prostate also played a minor supporting role in urinary control and sexual function. Whoops. But don’t worry—surgeons assure you that these functions “usually return with time,” which is technically true, if you’re very patient and have a rich fantasy life involving pharmaceutical support and absorbent underwear.

Maybe you’re not into knives. Maybe you like your suffering slow-cooked instead of flash-fried. In that case, radiation is for you. You can go external, where you’re zapped daily by a machine the size of a sedan while making polite conversation with the technician who’s probably twelve. Or you can opt for brachytherapy, which involves implanting radioactive seeds directly into your prostate, turning you into a glow-in-the-dark fertility deterrent. Radiation’s charm lies in its subtlety: you won’t feel a thing—until you do. Slowly, insidiously, your bowels revolt, your bladder burns, and you begin to understand what it must feel like to be a microwaved burrito.

But wait—what if you like all the side effects? What if you look at each treatment and think, “Why choose just one when I could ruin my body in multiple dimensions?” Enter triple therapy: the gourmet tasting menu of prostate cancer care. External beam radiation? Absolutely. Brachytherapy? Sprinkle that on top. And then—and this is the chef’s kiss—you’re lovingly marinated in androgen deprivation therapy for a year or two. It’s the full prostate purge, a medical cleanse in which your cancer is attacked from every angle while your endocrine system quietly implodes.

Triple therapy is the option for when you and your doctors agree that your cancer is just a bit too ambitious and needs a full-on smackdown. The upside? Statistically higher rates of cancer control. The downside? Statistically higher chances of feeling like a fatigued, emotionally fragile, hormonally unbalanced shell of your former self. You’ll wake up soaked in hot flashes, cry at dog food commercials, and slowly forget where you put your car keys… or your will to live. Meanwhile, your libido will become a quaint memory from a past life—like cassette tapes or drive-in theaters.

All the while, your doctors—each more confident than the last—will present their preferred treatments as The One True Way. Surgeons love surgery. Radiation oncologists swear by radiation. Medical oncologists believe everyone should be chemically neutered indefinitely. No one agrees, but each is 100% certain. It’s like a religious debate, but with more co-pays. Your role in this? To nod, Google obsessively at 3 a.m., and eventually choose the option that sounds least like medieval torture, knowing full well you might regret it later.

And what about the side effects? The real ones, not the sanitized bullet points on the pamphlet. We’re talking about the erosion of dignity as you leak urine in a shopping mall, the awkward silences in the bedroom, the slow, sinking realization that your body will never again feel like it used to. Not to mention the newfound ritual of anxiously awaiting every PSA test, hoping your cancer hasn’t decided to make a sequel.

In the end, there are no good options—just different flavors of compromise. You’ll pick your poison, endure the fallout, and try to patch together a new version of yourself from the slightly smoldering ruins. The good news? You’ll probably live. The bad news? You’ll have the rest of your life to think about the trade-offs.

Prostate cancer isn’t just a diagnosis. It’s a full-time job, an identity crisis, and a masterclass in medical gaslighting. But at least now, you’ll finally understand what they meant by “the good cancer.” Good, as in “not instantly fatal.” Or perhaps, good as in “you’ll eventually be grateful, once the fog of hormone-induced apathy sets in.”

So congratulations again. And remember: no matter what you choose, there will always be someone with a smug opinion telling you you did it wrong. But hey, at least you’re not dead.

Yet.

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

Hans,
I hope your writing makes you feel better, it makes me feel better. Sometimes lighter and happier and sometimes just a little bit blue as I unfortunately know exactly what you mean about compromises, but I always feel a little less isolated. I've been really blessed in my life to have many friends, some lifelong, but if they haven't had a PC diagnosis discussion with them aren't really that helpful for anyone.

You are a tremendous asset to this group.

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@stu6060

Hans,
I hope your writing makes you feel better, it makes me feel better. Sometimes lighter and happier and sometimes just a little bit blue as I unfortunately know exactly what you mean about compromises, but I always feel a little less isolated. I've been really blessed in my life to have many friends, some lifelong, but if they haven't had a PC diagnosis discussion with them aren't really that helpful for anyone.

You are a tremendous asset to this group.

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Thank you for that—it means more than you know. And yes, writing helps... it’s cheaper than therapy and has fewer side effects than Firmagon (though it does nothing for hot flashes or the sudden urge to reorganize my sock drawer at 3am).

You’re spot on about the conversations with friends—unless they’ve sat in the “you have prostate cancer” chair, the well-meaning support can sometimes feel like trying to fix a leaky boat with duct tape and good vibes. But I know it’s coming from love, and that counts for something, even if it doesn’t help me decide between radiation options or how to explain ADT rage to the dog.

That’s why this group, and voices like yours, matter so much. We’re all trading war stories and scar tissue—not because misery loves company (though let’s face it, sometimes it does)—but because someone else is about to walk into the same maze we just stumbled through. And maybe, just maybe, they’ll trip a little less, bleed a little less, and feel a little more confident in the choices they have to make.

We’re not experts but we’ve earned some stripes in the worst kind of school. And if sharing what we’ve learned helps the next guy feel less alone, more informed, or just able to exhale for the first time in a week, then that’s a win in my book.

Thanks again for being part of this misfit band of prostate warriors. We may not have chosen this club, but damn it, we’re making it count.

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I really wish you the best on your journey. I guess I shouldn't say this out loud, but I kinda jumped to the front of the line. My first diagnosis was stage 4 in the bones, psa was 932. My only decision was get treatment or let the cancer run wild. Of course I started the treatment, got the chemo and the rest of the meds. I'm two years into my treatment, deal with the SE like everyone else. I've accepted my diagnosis. Life goes on. I didn't have all the anxiety of having to choose what treatment, my scans went really fast I think. I sometimes think others have it worse then me, trying to decide what treatment to go with, sometimes hearing the cancer is gone, nope, it came back. I certainly don't have any words of wisdom, (I'm not the sharpest tool in the shed) but I do wish for everyone the best on their journey. Best to all.

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@stevecando54

I really wish you the best on your journey. I guess I shouldn't say this out loud, but I kinda jumped to the front of the line. My first diagnosis was stage 4 in the bones, psa was 932. My only decision was get treatment or let the cancer run wild. Of course I started the treatment, got the chemo and the rest of the meds. I'm two years into my treatment, deal with the SE like everyone else. I've accepted my diagnosis. Life goes on. I didn't have all the anxiety of having to choose what treatment, my scans went really fast I think. I sometimes think others have it worse then me, trying to decide what treatment to go with, sometimes hearing the cancer is gone, nope, it came back. I certainly don't have any words of wisdom, (I'm not the sharpest tool in the shed) but I do wish for everyone the best on their journey. Best to all.

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Wow—PSA 932? That’s not jumping the line, that’s taking a jetpack straight to the front and crash-landing in the oncology department! You really said, “Stage 4? Let’s do this,” and then rolled up your sleeves like it was just Tuesday.

But seriously, your honesty, humility, and quiet strength hit harder than the chemo—and that’s saying something. You’ve got the kind of attitude that makes people pause, laugh a little, and remember that even in the middle of the storm, there’s room for grace (and gallows humor).

Not the sharpest tool in the shed? Maybe. But clearly the toughest damn wrench in the box. Keep doing what you’re doing—you’re inspiring more people than you know, just by showing up, staying real, and dealing with the side effects like a boss. Wishing you continued strength, stable scans, and zero surprises.

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Thank you for putting it into words what amounts to a very accurate description of prostate cancer. I think about how little is known about the disease and the lack of information to guide you. Especially if you are on the less obvious side, favorable cancer, like a 3+4. What does PSA really tell you if some people have a PSA of 4 with unfavorable cancer, while others have a PSA of 8 with favorable cancer. Say you have multiple biopsies, with one 3+4. Is that little amount of Gleason 4 worth the pain of surgery or radiation? Most Dr's would say yes. And your prostate is 40-50 cm. The biopsy needle is only 1.2 mm diameter. You would need 400+ biopsy needles to cover the entire prostate area. Can you ever understand the amount of cancer in your prostate through biopsies? So you decide to go the path of least resistance with the hope that you are extending your life, when in reality, you may have died naturally with the cancer. The real kicker is that as you stated, most advice from the doctors is biased based on their speciality, leaving it up to you, the amateur, to decide how to move forward because there is no definitive path due to lack of concrete knowledge of prostate cancer.

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Laughed out loud at your synopsis and copied it!

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@wahoo02

Laughed out loud at your synopsis and copied it!

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Humouring this is the only way I can stay sane.

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For me, the decision process was not difficult, but it was time-consuming. First, some background —>

In April 2012 (at 56y), I was diagnosed with low-grade, localized prostate cancer: PSA of 4.2, Gleason 6(3+3). Since it was only a 3+3, there was no need to panic or rush to a hasty treatment decision; I had time on my side and chose active surveillance (AS). I was on AS for 9 years, which bought me time to get referrals, evaluate all available treatment modalities, and take advantage of medical and technological advances, so that if/when the time ever came to make a treatment decision (which it eventually did), I’d be ready to pull the trigger (so to speak).

One of the understandings I had with my doctors was that quality-of-life and successful treatment were equal priority for me. And, with the data clearly indicating that success rates comparing surgery with radiation being statistically equivalent no matter which treatment is chosen, the ultimate decision came down to side-effects and quality-of-life (and what insurance would pay for, of course).

So, not only did I consider the factors mentioned above, I also added an additional consideration —> what were my expectations coming from this decision?

With every other major decision in my life where I have the time to decide - buying a house, a car, choosing a career, going on vacation, (even choosing a spouse?), having my gallbladder removed 1-1/2 years ago, etc. - I make a list of what I want and what I don’t want. With all other factors being statistically equivalent, this decision for prostate cancer treatment was no different than any other major life decision.

The way I pushed through the agony of the treatment decision was through introspection…. what did I want out of this?

I wanted to balance quality of life with survival (of course!) along with the possibility of treatment in the future if needed (as medical treatments and science progress). This was about utilizing the best modern treatment techniques to get the best outcome while still surviving and maintaining my quality of life. (Every medical-related decision I ever made I made the same way; why not this?)

So, I put together a spreadsheet and listed across all treatment options that I had thoroughly looked into. Then listed down all possible & possibilities (%) of side-effects from each type of treatment, and gave each one a score. The one with the lowest total “score” ranked highest. I then took that list, and narrowed it down based on the prevention and cautionary activities available related to each individual type of treatment.

I then “scored” the quality of life priorities that came out of my introspection, and compared that final score result with the treatment options score result.

The score that was closest matching was my 1st choice, 2nd closest was my 2nd choice, etc. Surgery ranked last —> then SBRT —> then IMRT —> finally Proton ranked at the top.

Having already decided my choice of treatments, when my Gleason did hit 7(3+4) and a Prolaris test indicated that I had “exceeded the threshold for active surveillance”(and my PSA never exceeding 8), I pulled the trigger.

Ultimately, I decided on 28 sessions of proton beam radiation (that I had during April-May 2021) and SpaceOAR Vue (injected before treatments started).

However, prior to starting proton radiation treatment, a 2nd opinion upgraded the 3+4 to a 4+3. Understanding that a Gleason score is just one specialist’s educated opinion of what is seen in the biopsies tissues. A 2nd (or 3rd) opinion is exactly that as well - just a pathologist’s educated, expert opinion of what is seen in the tissues under a microscope - and carries no more weight than the 1st one. Much of the interpretation of images, scans, and slides is often as much an art as it is a science and dependent on the skill and experience of whoever is doing the reading. There’s no way to know which one is “right.”

So, I made a personal commitment prior to the 2nd opinion:
> if the 2nd opinion came back a lower 6(3+3), I would still get treated to the higher 7(3+4).
> if the 2nd opinion came back the same 7(3+4), I would get treated to the 7(3+4).
> if the 2nd opinion came back a higher 7(4+3), I would get treated to the higher 7(4+3).
As it turned out, the 2nd opinion came back a higher 7(4+3). So, we simply added 6 months (two 3-month injections) of Eligard (that I had in April & July 2021) to the treatment plan. The decision was that easy.

During treatments, PSA went as low as < 0.008; after the Eligard was out of my system, my nadir was 0.20. Today, almost 4 years after starting proton radiation treatments, my PSA varies between 0.35-0.55 (the most recent PSA two months ago was 0.47).

Side-effects have been quite minimal. My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. The short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.

The key is to have a structured, methodical process in place to help in the decision-making process. I pushed emotions, cynicism, and thoughts about death aside - they added no value to my decision-making process.

A decision has to be made; make it a good (and informed) one.

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What a wonderfully written post! I'm two years into my "journey" of mPCa. I chuckled at many of your statements. I can because I've already stabilized from that horrible shock we all feel when we're diagnosed. I don't think newbies will appreciate your analysis and comparisons of treatments, but your post should be shared with the guys who have been in our special club for at least a year. I'll be sharing a link to your post with my PCa friends

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@hanscasteels

Thank you for that—it means more than you know. And yes, writing helps... it’s cheaper than therapy and has fewer side effects than Firmagon (though it does nothing for hot flashes or the sudden urge to reorganize my sock drawer at 3am).

You’re spot on about the conversations with friends—unless they’ve sat in the “you have prostate cancer” chair, the well-meaning support can sometimes feel like trying to fix a leaky boat with duct tape and good vibes. But I know it’s coming from love, and that counts for something, even if it doesn’t help me decide between radiation options or how to explain ADT rage to the dog.

That’s why this group, and voices like yours, matter so much. We’re all trading war stories and scar tissue—not because misery loves company (though let’s face it, sometimes it does)—but because someone else is about to walk into the same maze we just stumbled through. And maybe, just maybe, they’ll trip a little less, bleed a little less, and feel a little more confident in the choices they have to make.

We’re not experts but we’ve earned some stripes in the worst kind of school. And if sharing what we’ve learned helps the next guy feel less alone, more informed, or just able to exhale for the first time in a week, then that’s a win in my book.

Thanks again for being part of this misfit band of prostate warriors. We may not have chosen this club, but damn it, we’re making it count.

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"though it does nothing for hot flashes or the sudden urge to reorganize my sock drawer at 3am)."

I laughed because I just reorganized not only my sock drawer, but my underwear drawer, my running clothes drawers and my shorts drawer. Basically, all my clothing drawers. Threw out a bunch of stuff too. I wasn't at 3am, but 6pm on a Saturday evening. I didn't tie it to ADT, but who knows 🙂 Thanks for the laugh!

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