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A users guide to PCa treatment side effects

Posted by hans_casteels @hanscasteels, Apr 6 12:11pm

A dark, cynical, and painfully honest guide to treatment side effects—because someone has to say it. Treatments offer similar chances of survival. When you need to chose a treatment, what you’re really choosing, is what side effects will you be able to live with. Welcome, brother. You didn’t volunteer for this, but here you are: standing at the edge of a long, winding, body-altering hallway charmingly referred to as “treatment.” Maybe you were handed a pastel-colored pamphlet filled with vague reassurances, words like "coping" and "options," and stock photos of silver-haired men flying kites or playing chess in sun-dappled parks. Don’t be fooled. That’s fiction. This is the real manual—delivered late, hidden behind your urologist’s desk, probably under the samples of stool softeners and erectile aids. This is the field guide to the emotional, hormonal, gastrointestinal, and urological minefield ahead.

Let’s begin, naturally, with surgery. The radical prostatectomy sounds heroic, doesn’t it? Like you’re about to embark on a noble quest. In truth, it’s more like being jumped in an alley by a surgical robot. “Minimally invasive,” they say, as if a metal claw gently yanking out your prostate and duct-taping your bladder to your urethra is akin to clipping a hangnail. You’ll wake up with a catheter—an intimate device that removes urine and self-esteem in equal measure. For days, you’ll shuffle around with a tube snaking out of you like a sad aquarium filter, trying not to think about what’s leaking and why.

After that, the incontinence begins. Some men bounce back fast. Others spend months mastering the ancient art of pelvic-floor squeezing. You’ll be taught Kegel exercises, which are basically mindful butt clenches you do anywhere and everywhere, silently praying to the gods of continence. The cheerful physiotherapist will smile as she talks about muscle tone. You’ll nod and pretend this is all very normal while trying not to burst into tears during your first sneeze.

Then comes the sexual aftermath, which is glossed over in the consent form but lands like a wrecking ball. Your once-trusty penis becomes a moody ghost—disappearing without explanation, occasionally reappearing like a washed-up celebrity doing regional theater. You'll try pills, pumps, maybe even injections directly into the shaft (yes, really). And for the particularly committed, there’s the penile implant, a sort of inflatable life raft for your love life. It’s functional, it’s mechanical, and it turns sex into an engineering project. Spontaneity? Dead. Romance? Replaced by a user manual and a quiet hiss of hydraulics.

Now, suppose you skip surgery and head into radiation—specifically, External Beam Radiation Therapy (EBRT). This isn’t treatment. It’s a ritual. Every day, you lie motionless on a hard table, bladder full, rectum empty, while a multi-million-dollar death ray circles ominously. You’ll spend mornings chugging water and praying for a bowel movement on schedule, like some deranged yogi with a toilet dependency. A full bladder moves the small intestine out of harm’s way, which is great in theory—except when your bladder fills too well and you’re clenching like a hostage.

Radiation’s effects are cumulative and sneaky. First, it’s nothing. A bit of fatigue. Maybe your poop gets a little uppity. Then one day you cough and realize you’ve just played—and lost—the worst game of roulette imaginable. You start carrying spare underwear. You fear gas like it’s a tactical assault. You scrutinize menus for fiber content like a paranoid detective. You become bowel-aware. That’s not a thing you wanted. But it’s who you are now.

And then there’s brachytherapy, which is like radiation’s more intimate cousin. Low Dose Rate (LDR) brachytherapy involves implanting radioactive seeds into your prostate. Permanently. Yes, you're now lightly radioactive. You’re told not to cuddle infants or pregnant women, and you briefly consider updating your Tinder bio to “Glows in the dark, literally.”

High Dose Rate (HDR) brachytherapy is even more invasive. Catheters are inserted through your perineum (that unsung area between scrotum and anus) while radioactive material is pumped in and out like a slow-motion horror film. Afterward, your perineum feels like it’s been used in a medieval experiment, and urination resembles passing lava. It’s a deeply personal betrayal by your own body, and yet somehow, it’s all still "within expected side effects."

And towering above all of this is Androgen Deprivation Therapy (ADT), lovingly known as chemical castration. It’s hormone suppression in a syringe or pill, and it will remake you. Your testosterone levels drop to prepubescent levels. Your libido disappears into witness protection. Your emotions go haywire. One day you’re crying over a dog food commercial; the next, you’re enraged at your socks. Your muscles wither. Your belly expands. Your memory? Shot. Your energy? Gone. You become a stranger in your own body—a flabby, foggy, hot-flashing version of yourself who can’t sleep, can’t think, and definitely can’t get it up.

Eventually, if you survive the gauntlet of side effects and your PSA behaves, you enter surveillance. It sounds gentle. It isn’t. It’s a low-grade panic that never goes away. Every blood test becomes a psychic minefield. Every decimal point a verdict. You learn to live between test results, celebrating stability while secretly suspecting the cancer is just biding its time like a cartoon villain waiting offstage.

But—and here’s where the real weirdness begins—you adapt.

You learn the locations of every toilet in your zip code. You develop Kegel stamina rivaling elite athletes. You learn what foods won’t trigger an internal coup. You accept your body’s betrayals with grim humor and a roll of your eyes. You bond with fellow travelers, trading war stories over waiting room coffee, laughing like men who know too much. You mourn what you’ve lost, but you also gain something—perspective, resilience, a willingness to laugh when everything else has gone to hell.

In the end, prostate cancer doesn’t just change your body—it rewires your brain. It strips you down, beats you up, and leaves you limping—but still upright. And if you’re lucky, it leaves you with a sharp, bitter humor forged in radiation and regret. That humor? It’s untouchable. They can cut, burn, and drug you—but they can’t take your smirk.

So yes, your prostate tried to kill you. But it also gave you one hell of a story. And you, my friend, are still here to tell it.

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

stevecando54 | @stevecando54 | Apr 7 5:56am

This is pretty serious stuff and yet for some reason, I can't stop laughing after reading this post. It's easier to just blame it on the meds, at times I just start laughing for no seemingly reason. My wife gave up asking why I'm laughing as I have no idea. Some say they just started living life to the fullest after getting their diagnosis, I'm not sure what that means, I just try to get through the day as best I can. I have the side effects from the meds every day but if my head stays in the game, it's a good day. Sometimes I put my foot in that hole and remind myself that tomorrow will be better. Some don't like the phrase, "It's not curable but we can control it", well that is all I have to go on. Some how that is easier for me to accept what I have. Others post how they have been able to deal with this for a long time, I take a lot of encouragement from that, I must be good to go. Have a good day and Best to all.

REPLY
1 reply
heavyphil | @heavyphil | Apr 7 8:53am
In reply to @stevecando54 "This is pretty serious stuff and yet for some reason, I can't stop laughing after reading..." + (show)
@stevecando54

This is pretty serious stuff and yet for some reason, I can't stop laughing after reading this post. It's easier to just blame it on the meds, at times I just start laughing for no seemingly reason. My wife gave up asking why I'm laughing as I have no idea. Some say they just started living life to the fullest after getting their diagnosis, I'm not sure what that means, I just try to get through the day as best I can. I have the side effects from the meds every day but if my head stays in the game, it's a good day. Sometimes I put my foot in that hole and remind myself that tomorrow will be better. Some don't like the phrase, "It's not curable but we can control it", well that is all I have to go on. Some how that is easier for me to accept what I have. Others post how they have been able to deal with this for a long time, I take a lot of encouragement from that, I must be good to go. Have a good day and Best to all.

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Steve, great attitude, brother! I am glad you can still have silver lining moments!
I have glaucoma - incurable but treatable; I have high blood pressure -incurable but treatable. Ditto for atherosclerosis.
Many of us have diabetes, autoimmune diseases, myasthenia gravis, bleeding disorders - all incurable but treatable. The list is simply too damned long!
In my @heavyphil moments I want to kick and scream and raise my fist (and middle finger) to the sky. But when I’m in my @stevecando54 moments, I don’t obsess, I don’t bemoan my fate and I lump this PCa crap in with all the rest - treatable but not curable…big effing deal! Thanks for the boost.
Phil

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1 reply
garylr | @garylr | Apr 7 11:32am

My father was diagnosed with prostate cancer when he was 70 years old (this was 1989). I have no idea about his Gleason score, and I doubt that they were doing genetic testing back then. By that point in his life, he had had three heart attacks and had undergone quintuple bypass surgery. They did active surveillance (I think they called it "watchful waiting" at the time) and he died of congestive heart failure at the age of 80 - the way active surveillance is supposed to work.

I'm 68 years old. Diagnosed at age 66 with localized, not especially aggressive prostate cancer. We did active surveillance for about a year and then some test results led me to pursue treatment (I don't have any have any other health problems that are likely to kill me in the next 10 years). Six months of ADT (Orgovyx) wrapped around 28 sessions of EBRT. Side effects have been annoying, but not awful. Don't really know yet about efficacy of the treatment regimen - blood work coming up soon.

During the time I've been dealing with prostate cancer, my wife, who has glaucoma, Type-2 diabetes, some sort of chronic problem with her esophagus, and a degenerative bone problem in her cervical vertebrae, was diagnosed with A-fib, which left her with basically no energy for the past year. She had a surgical procedure on Friday which we hope will solve that problem. Puts my prostate cancer situation in a little different light.

I'm more fortunate than many folks on this forum, in that my cancer is less-aggressive (we think) and has not metastasized (we think). I've appreciated the information and insights (as well as the support) I've picked up since joining a few months ago.

Prostate cancer is serious business, and we all need to educate ourselves and advocate for ourselves. But I also worry that sometimes, there's too much "doom and gloom" here and too much antipathy toward the medical community we're dealing with. If you read through 1,000 posts on this forum, you'll find 1,000 different experiences - in terms of symptoms, diagnostic procedures, reactions to diagnoses, treatment choices, treatment side effects, efficacy of treatment, etc. Medicine is nowhere near an exact science, so we need to be actively involved in our treatment. So, while I ask questions and sometimes challenge/push back against my medical team, I'm generally convinced that they're doing their best for me.

Just my two cents.

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2 replies
hans_casteels | @hanscasteels | Apr 7 12:14pm
In reply to @garylr "My father was diagnosed with prostate cancer when he was 70 years old (this was 1989)...." + (show)
@garylr

My father was diagnosed with prostate cancer when he was 70 years old (this was 1989). I have no idea about his Gleason score, and I doubt that they were doing genetic testing back then. By that point in his life, he had had three heart attacks and had undergone quintuple bypass surgery. They did active surveillance (I think they called it "watchful waiting" at the time) and he died of congestive heart failure at the age of 80 - the way active surveillance is supposed to work.

I'm 68 years old. Diagnosed at age 66 with localized, not especially aggressive prostate cancer. We did active surveillance for about a year and then some test results led me to pursue treatment (I don't have any have any other health problems that are likely to kill me in the next 10 years). Six months of ADT (Orgovyx) wrapped around 28 sessions of EBRT. Side effects have been annoying, but not awful. Don't really know yet about efficacy of the treatment regimen - blood work coming up soon.

During the time I've been dealing with prostate cancer, my wife, who has glaucoma, Type-2 diabetes, some sort of chronic problem with her esophagus, and a degenerative bone problem in her cervical vertebrae, was diagnosed with A-fib, which left her with basically no energy for the past year. She had a surgical procedure on Friday which we hope will solve that problem. Puts my prostate cancer situation in a little different light.

I'm more fortunate than many folks on this forum, in that my cancer is less-aggressive (we think) and has not metastasized (we think). I've appreciated the information and insights (as well as the support) I've picked up since joining a few months ago.

Prostate cancer is serious business, and we all need to educate ourselves and advocate for ourselves. But I also worry that sometimes, there's too much "doom and gloom" here and too much antipathy toward the medical community we're dealing with. If you read through 1,000 posts on this forum, you'll find 1,000 different experiences - in terms of symptoms, diagnostic procedures, reactions to diagnoses, treatment choices, treatment side effects, efficacy of treatment, etc. Medicine is nowhere near an exact science, so we need to be actively involved in our treatment. So, while I ask questions and sometimes challenge/push back against my medical team, I'm generally convinced that they're doing their best for me.

Just my two cents.

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the ever-optimistic realist—a rare and curious species on these forums, often spotted gingerly suggesting that perhaps the sky isn't entirely falling, just leaning a bit.

You're quite right, of course. The sheer variety of experiences here reads like a choose-your-own-adventure book written by Kafka and edited by a pharmacist. One man’s harmless PSA bump is another’s descent into radiological purgatory. And let’s not forget the joy of side effects—truly the buffet table of modern medicine, where you never quite know whether you’ll get hot flashes, erectile dysfunction, or the sudden urge to weep into a cup of green tea.

It’s refreshing to hear someone suggest that doctors, on balance, might not be part of a vast conspiracy to ruin our weekends. They may not always get it right, bless them, but they are usually trying, which is more than can be said for my DIY attempts at anything.

As for the doom and gloom—it’s a prostate cancer forum. Hope is permitted, but only if accompanied by a sarcastic cough and a disclaimer that you’re not getting too carried away. Still, keep up the sensible balance of skepticism and optimism.

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1 reply
garylr | @garylr | Apr 7 9:14pm
In reply to @hanscasteels "the ever-optimistic realist—a rare and curious species on these forums, often spotted gingerly suggesting that perhaps..." + (show)
@hanscasteels

the ever-optimistic realist—a rare and curious species on these forums, often spotted gingerly suggesting that perhaps the sky isn't entirely falling, just leaning a bit.

You're quite right, of course. The sheer variety of experiences here reads like a choose-your-own-adventure book written by Kafka and edited by a pharmacist. One man’s harmless PSA bump is another’s descent into radiological purgatory. And let’s not forget the joy of side effects—truly the buffet table of modern medicine, where you never quite know whether you’ll get hot flashes, erectile dysfunction, or the sudden urge to weep into a cup of green tea.

It’s refreshing to hear someone suggest that doctors, on balance, might not be part of a vast conspiracy to ruin our weekends. They may not always get it right, bless them, but they are usually trying, which is more than can be said for my DIY attempts at anything.

As for the doom and gloom—it’s a prostate cancer forum. Hope is permitted, but only if accompanied by a sarcastic cough and a disclaimer that you’re not getting too carried away. Still, keep up the sensible balance of skepticism and optimism.

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@hanscasteels - I've read many of your posts, and I appreciate your perspective on what we're all dealing with here.

I am, as you note, an optimist. I try to maintain a healthy level of skepticism, too. I also try to avoid letting that skepticism drift over into cynicism - slippery slope, I guess.

Best wishes,
Gary

REPLY
heavyphil | @heavyphil | Apr 8 6:39am
In reply to @garylr "My father was diagnosed with prostate cancer when he was 70 years old (this was 1989)...." + (show)
@garylr

My father was diagnosed with prostate cancer when he was 70 years old (this was 1989). I have no idea about his Gleason score, and I doubt that they were doing genetic testing back then. By that point in his life, he had had three heart attacks and had undergone quintuple bypass surgery. They did active surveillance (I think they called it "watchful waiting" at the time) and he died of congestive heart failure at the age of 80 - the way active surveillance is supposed to work.

I'm 68 years old. Diagnosed at age 66 with localized, not especially aggressive prostate cancer. We did active surveillance for about a year and then some test results led me to pursue treatment (I don't have any have any other health problems that are likely to kill me in the next 10 years). Six months of ADT (Orgovyx) wrapped around 28 sessions of EBRT. Side effects have been annoying, but not awful. Don't really know yet about efficacy of the treatment regimen - blood work coming up soon.

During the time I've been dealing with prostate cancer, my wife, who has glaucoma, Type-2 diabetes, some sort of chronic problem with her esophagus, and a degenerative bone problem in her cervical vertebrae, was diagnosed with A-fib, which left her with basically no energy for the past year. She had a surgical procedure on Friday which we hope will solve that problem. Puts my prostate cancer situation in a little different light.

I'm more fortunate than many folks on this forum, in that my cancer is less-aggressive (we think) and has not metastasized (we think). I've appreciated the information and insights (as well as the support) I've picked up since joining a few months ago.

Prostate cancer is serious business, and we all need to educate ourselves and advocate for ourselves. But I also worry that sometimes, there's too much "doom and gloom" here and too much antipathy toward the medical community we're dealing with. If you read through 1,000 posts on this forum, you'll find 1,000 different experiences - in terms of symptoms, diagnostic procedures, reactions to diagnoses, treatment choices, treatment side effects, efficacy of treatment, etc. Medicine is nowhere near an exact science, so we need to be actively involved in our treatment. So, while I ask questions and sometimes challenge/push back against my medical team, I'm generally convinced that they're doing their best for me.

Just my two cents.

Jump to this post

Gary, LOVE your post and excellent perspective. Even though I am a pessimist - and you, an optimist - our conclusions are basically the same.
In your 28 sessions of EBRT, I am sure you met many men who were a lot worse off than you. In the changing rooms there are a variety of cancers being treated and after seeing some of them, I was happy to have what I have!
Phil

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scottbeammeup | @scottbeammeup | Apr 8 7:07am

This is really helpful and oddly dark and hilarious!

I guess in some ways I was lucky. ADT literally made me suicidal, but I could still get erections and was encouraged to do so. The odd thing is that, while functional, sex wasn't very interesting and orgasm was impossible. Partner: "Are you having fun?" Me: (internally) "I wonder if drinking a bottle of antifreeze would be quick and painless?" But I did it to prove I was still "normal."

I also never got hot flashes but was FREEZING cold. I would take naps outdoors in the summer when it was 85 degrees and still be shivering. The shower with the heat turned all the way up was my best friend. I'd stand in it until the water heater was empty. My natural gas bill was the highest it had ever been.

Now, five months after stopping, my hormones are a mess. FSH through the roof high. Estradiol about as low as it can be. Testosterone fluctuating between low normal and borderline low. I did something I thought I'd NEVER do--take an antidepressant (Wellbutrin). Now I feel OK but wonder if I'm REALLY feeling OK or if it's just medication that's making me feel OK and the whole thing is false.

On the plus side, I retired two weeks ago so have all day to ... I don't know yet. Gym, bike ride and dog walk take 3 hours, volunteer work takes another 2, but that still leaves 11 hours I have to figure out what to do with.

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stevecando54 | @stevecando54 | Apr 8 7:13am
In reply to @heavyphil "Steve, great attitude, brother! I am glad you can still have silver lining moments! I have..." + (show)
@heavyphil

Steve, great attitude, brother! I am glad you can still have silver lining moments!
I have glaucoma - incurable but treatable; I have high blood pressure -incurable but treatable. Ditto for atherosclerosis.
Many of us have diabetes, autoimmune diseases, myasthenia gravis, bleeding disorders - all incurable but treatable. The list is simply too damned long!
In my @heavyphil moments I want to kick and scream and raise my fist (and middle finger) to the sky. But when I’m in my @stevecando54 moments, I don’t obsess, I don’t bemoan my fate and I lump this PCa crap in with all the rest - treatable but not curable…big effing deal! Thanks for the boost.
Phil

Jump to this post

Phil, it's never easy going through what we all have. At the start for me, from myself and family, "you got this". Many times going through the treatments of Firmagon and Chemo,, there were times where I was yelling, nooooo I don't have this and what the hell is "this" anyway. Over time it's gotten better for me to deal with the fatigue,, hot flashes make me laugh most times. There are days where the side effects are worse then other days, and of course I spend most of the day wondering why,( still can't figure that out, or why I'm trying to figure out anyway). This site has been so helpful for me, I learn a lot, although I still can't spell most of the medical terms of the meds and have to look up what they are. Hope you have a good day. Best to all.

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proftom2 | @proftom2 | Apr 8 9:55am

My optimism is my very own department of defense. After my “you can’t be cured, you can only be treated moment” I needed to fightback at my aPC that invaded my body and soul. I spent the next year in pain and misery beyond belief. It was so bad. I started Googling end of life methodologies, strategies, and pills. I wanted out. A no thrills out five times a day topped off with prayers to end this mess. The problem I had was prior to my diagnosis I had built a life path full of enlightenment and meaningful relationships.
I started building a brick wall around me full of optimism. I almost said hope, but I’ve learned in this state of being advanced prostate cancer, hope it’s not a good thing. It’s OK but it’s not good. It must be a defined hope. In other words, I hope that says it’s OK to be hopeful within this moment but stand guarded, it’s a guided hope. Along with my meditations and my prayers I seek out positive things about the world and my community and my people. Because I know that when I die and I’m gone, they’ll be one child born to carry on 2 carry-on.

REPLY
1 reply
hans_casteels | @hanscasteels | Apr 8 10:35am
In reply to @proftom2 "My optimism is my very own department of defense. After my “you can’t be cured, you..." + (show)
@proftom2

My optimism is my very own department of defense. After my “you can’t be cured, you can only be treated moment” I needed to fightback at my aPC that invaded my body and soul. I spent the next year in pain and misery beyond belief. It was so bad. I started Googling end of life methodologies, strategies, and pills. I wanted out. A no thrills out five times a day topped off with prayers to end this mess. The problem I had was prior to my diagnosis I had built a life path full of enlightenment and meaningful relationships.
I started building a brick wall around me full of optimism. I almost said hope, but I’ve learned in this state of being advanced prostate cancer, hope it’s not a good thing. It’s OK but it’s not good. It must be a defined hope. In other words, I hope that says it’s OK to be hopeful within this moment but stand guarded, it’s a guided hope. Along with my meditations and my prayers I seek out positive things about the world and my community and my people. Because I know that when I die and I’m gone, they’ll be one child born to carry on 2 carry-on.

Jump to this post

Raw, honest, and soul-deep. Thank you for sharing that.

Your words about building a wall of optimism, not as a denial but as armor, resonate. That shift from unanchored hope to “guided hope” hits true—hope with its boots on the ground, hope that’s been through fire and still shows up, clear-eyed and steady.

The way you’ve articulated that darkest stretch—Googling exits, overwhelmed by pain, praying for an end—and then described clawing your way back through connection, meditation, and intentional positivity... that's not just resilience; that’s defiance with grace.

And that last line? "Because I know that when I die and I’m gone, they’ll be one child born to carry on to carry on." That’s poetry. That’s legacy. That means refusing to be extinguished.

You’re not alone in this. And honestly, your message carries a torch for anyone walking the same road.

If you're ever open to it, I’d love to hear more about it

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