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.

@shank

My sense of happily ever after has been shot down.. my husband has been newly diagnosed.
Thank you for your honesty.

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@shank, getting this new diagnosis is hard for both of you. You may wish to join this related discusson:
- Any suggestions for the wife on how to support my husband?https://connect.mayoclinic.org/discussion/any-suggestions-for-the-wife/

How are you doing?

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@hanscasteels

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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Hans, I love your writing. At the same time there is quite a bit of hyperbole in your original post which could, frankly, terrify some newcomers unnecessarily. ADT does not always come with terrible side effects. My two years of Lupron came with fatigue, some hot flashes, some fat accumulation and joint and muscle pain, but all were tolerable and did not interfere with living an active life. Likewise external beam radiation. Not that big of a deal.
I think it's still true that most people with treated PCa live for many years and many die of something else.

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@windrider354

Hans, I love your writing. At the same time there is quite a bit of hyperbole in your original post which could, frankly, terrify some newcomers unnecessarily. ADT does not always come with terrible side effects. My two years of Lupron came with fatigue, some hot flashes, some fat accumulation and joint and muscle pain, but all were tolerable and did not interfere with living an active life. Likewise external beam radiation. Not that big of a deal.
I think it's still true that most people with treated PCa live for many years and many die of something else.

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Most likely the side effects of radiation. Or ADT

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@hanscasteels

Most likely the side effects of radiation. Or ADT

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I have most of my Sigmoid Colon missing from a resection.
I also have a fair size chunk of my right lower lung gone in yet another resection, this one called a wedge.
Up to that point, I was doing pretty good with the exception of a years worth of explosive diarrhea.
I have not had chemo .... ongoing scans and blood tests only.
All is good after 3 years.
From that, my attention was abruptly turned to Hyperthyroidism and diagnosed as Graves Disease. That was a year ago and I'll be on thyroid meds forever Iam sure.
So after that, I thought I was okay for awhile. I was doing very well all things considered.
And then we started watching the steady rise in PSA.
And then for the third time, I was told I had cancer.
I have had Brachytherapy and 25 weeks of IMRT radiation that was completed 4 months ago.
The Radiation has caused both bowel (Proctitis) and bladder (Cystitis) irritation. The bladder lining and my rectum has been damaged.
Fortunately, I am retired, which goes well with spending most of my days in the bathroom. I'm thinking of putting in a TV and a small dorm room fridge.

I have been taking ORGOVYX for the past 10 months.

My hot flashes have improved greatly. My diarrhea has not.
My only interest is in sleeping.
I can easily confuse AM hours for PM. I can sleep at any hour around the clock.
Living alone makes so much possible.
Yes, they do like to say that with prostate cancer, you will likely die of something else.
I don't want something else!
I'm plenty tired of all I've had.
I don't have the energy to deal with anything else.
I'm "all in". There is nothing else.
PAUL

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@paul28

I have most of my Sigmoid Colon missing from a resection.
I also have a fair size chunk of my right lower lung gone in yet another resection, this one called a wedge.
Up to that point, I was doing pretty good with the exception of a years worth of explosive diarrhea.
I have not had chemo .... ongoing scans and blood tests only.
All is good after 3 years.
From that, my attention was abruptly turned to Hyperthyroidism and diagnosed as Graves Disease. That was a year ago and I'll be on thyroid meds forever Iam sure.
So after that, I thought I was okay for awhile. I was doing very well all things considered.
And then we started watching the steady rise in PSA.
And then for the third time, I was told I had cancer.
I have had Brachytherapy and 25 weeks of IMRT radiation that was completed 4 months ago.
The Radiation has caused both bowel (Proctitis) and bladder (Cystitis) irritation. The bladder lining and my rectum has been damaged.
Fortunately, I am retired, which goes well with spending most of my days in the bathroom. I'm thinking of putting in a TV and a small dorm room fridge.

I have been taking ORGOVYX for the past 10 months.

My hot flashes have improved greatly. My diarrhea has not.
My only interest is in sleeping.
I can easily confuse AM hours for PM. I can sleep at any hour around the clock.
Living alone makes so much possible.
Yes, they do like to say that with prostate cancer, you will likely die of something else.
I don't want something else!
I'm plenty tired of all I've had.
I don't have the energy to deal with anything else.
I'm "all in". There is nothing else.
PAUL

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Hey Paul, That is a LOT to carry. No one wants to be the poster child for anything, but I think you certainly qualify, in my mind at least, as one of those people who is much less fortunate health wise than most of us.
If all I ever have to deal with is my prostate cancer, I’ll take it!
Best,
Phil

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@heavyphil

Hey Paul, That is a LOT to carry. No one wants to be the poster child for anything, but I think you certainly qualify, in my mind at least, as one of those people who is much less fortunate health wise than most of us.
If all I ever have to deal with is my prostate cancer, I’ll take it!
Best,
Phil

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Phil, the strange thing is that all of this is over the past 3 years.
The first 72 years of my life was without a doctor or hospital ever. Cataracts only.
I have never been overweight. No problems with blood pressure, cholesterol, diabetes, or otherwise.
I was a poster child for perfect health.
Today, I feel good, no pain, I can do whatever I want with no help from anyone.

I don't think of myself as having a mess of health problems.
I only have "medical occurrences".
You die from health problems. Medical occurrences are only an inconvenience.
( I just made that up 😆)
PAUL

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