The Waiting Room: A Post Treatment Parable for the Terminally Stable

Posted by hans_casteels @hanscasteels, 5 days ago

So you did it.
You checked your PSA, because you’re responsible like that—or more likely, because a doctor with an unnecessarily cheerful tone suggested it while wearing a tie printed with cartoon prostates.
You got your result. It was “elevated.” Which is a word that sounds like you're achieving something, like maybe you're spiritually rising above it all. Nah, you're not.

Then came the biopsy. A lovely exercise in being shanked repeatedly in the taint while lying on your side pretending this is somehow dignified. They found cribriform patterns—sounds like artisanal bread, behaves like malicious coral.

You got the news: high-risk prostate cancer.
Not the kind you "watch and wait."
Not the kind that grows so slowly you can finish your will and your whiskey in peace.
No, this was the hurry-up-and-do-something-before-it-escapes-the-building variety.
PSA: 26.
Gleason: 3+4 with a sinister cribriform grin.
Perineural invasion, because apparently your tumor likes to travel.
A real social climber.
So they launched the full treatment offensive.
Firmagon—because nothing says “fun” like a chemical castration that makes your body believe it’s menopausal and dying.
HDR brachytherapy—essentially radioactive seed implantation, or as I like to call it: atomic gardening for your nether regions.
Then External Beam Radiation—just in case there was a single rogue cell left that didn’t get the memo.

And now?
You guessed it.
You wait.
Because in high-risk land, the treatment is just the beginning of the psychological hostage situation.
See, the medical team has finished throwing the kitchen sink at your pelvis, but you’re still left staring at a door marked Uncertainty like it’s the finale of a Kafka play.
You ask, “Is it gone?”
They say, “Let’s give it time.”
You ask, “How will we know?”
They say, “PSA should tell us.”
You ask, “What if it doesn’t?”
They blink. Smile. “Then we keep monitoring.”
Translation: You’re not cured. You’re "managed."
You’re not a patient. You’re a probability curve.

And the only thing anyone seems certain about is that you should come back in six months—preferably still alive, cheerful, and not asking too many clever questions about androgen receptors.
You ask about tumor biology—about cribriform architecture thriving in low-testosterone environments.
You mention studies suggesting long-term ADT might create resistant, aggressive clones.
They nod politely and recommend calcium supplements.
You are now the problem.
Not the cancer.
You.
Because you won’t accept the dogma that says: “Suppress the hormones, irradiate the gland, hope for the best.” You want to know if the monster is dead, or just learning how to live without testosterone.

But answers? No, no, those are in short supply.
What’s in abundance is surveillance. And waiting.
And a creeping suspicion that what you're really waiting for is a relapse they’ll call "unexpected"—but you’ll call "Chapter Two."
Because high-risk doesn’t go away. It just stops calling for a while.
Then came treatment. Maybe you had Firmagon, which is what happens when testosterone is outlawed and hot flashes are sold wholesale. Or maybe you opted for radiation, which is essentially the medical equivalent of burning the village to save it—except the village is your prostate and the savior is a machine that hums like a disapproving librarian.
And now... you wait.
Oh yes. The Waiting.

They don’t tell you this part. They don’t say that after all the needle pokes, hormone suppression, and radioactive implants, you will be left sitting in the purgatory of post-treatment limbo. Not cured. Not sick. Just watchfully worried.
You wait for your PSA to drop, plateau, or rise again—like some tragic stock you regret investing in.
You wait for symptoms to mean nothing… or something.
You wait for six-month follow-ups that always end with:
“Well, we’ll keep monitoring.”
Because that is the gold standard of post-prostate cancer management: Surveillance by Optimism. The “if nothing’s exploding, assume progress” model of care.
Here’s the real kicker: no one knows if the thing they treated was ever going to kill you.
Maybe it was.
Maybe it wasn't.

But the dogma says: Treat first. Ask questions when it’s metastasized.
Because medicine loves a flowchart, and if you don’t fit the chart, you’re either “an unusual case” or “non-compliant.”
So you wait.

And while you wait, you read. Big mistake. You discover things like “ADT can potentially accelerate resistant phenotypes” and “cribriform architecture is linked to aggressive disease, especially in low-androgen environments.” You raise this with your doctor, and he gives you the same expression you give a Labrador who’s trying to understand calculus.

You are now that guy in the waiting room with a folder full of studies, a rising existential crisis, and a sneaking suspicion that the cancer isn't the only thing you're being managed for.
So what are you really waiting for?
• For the tumor to declare its true intentions?
• For the guidelines to change—again?
• For someone to admit that “watchful waiting” is just a way of not having to say, “We don’t know”?
• For a scan to light up? A number to climb? Or maybe, just maybe, for someone to say, “You were right to be suspicious, and yes, we treated the theory, not the disease.”
But don’t worry. You’ll be told to keep positive.
You’ll be offered meditation apps.
You’ll be told that “you’re doing great” while your testosterone’s at fossil levels and your libido has packed its bags and gone on an indefinite sabbatical.
Because here, in the post-treatment waiting room, you are stable—terminally, perpetually, frustratingly stable.
And the one thing worse than having cancer... is not knowing if you still do.
Welcome to the Waiting. Please take a seat. We’ll be with you shortly. Or never.

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

@hanscasteels

If I don’t share my experience with those that come after me, what’s the point? If one unsuspecting prostate cancer victim can leverage some of our collective experience so that his treatment would be more tailored and effectieve, that’s a win in my book. Call me the reluctant but eager chronicler

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And I would encourage each one of us to do the same

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@stevecando54

For me, knowing my stage 4 is not going away, has become easier to accept. I do feel for the many whom have a chance that theirs will be cured. I would have such a hard time dealing with that with all the anxiety that comes with always wondering if its coming back. So many stories of being okay for years, then "Houston we have a problem". As I look at this posting, I'm not sure I'm saying what I intended to say, but I do feel for those that are constantly wondering about their outlook. Best to all.

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I hadn't thought of it that way. Yes, there is definitely a lot of anxiety and also mixed messaging. I've been told "we can cure you" and also told "there is no cure, just remission." So which is it? I'm glad I was just moved to six month PSA tests rather than three so at least I can enjoy the summer pretending there's nothing wrong with me.

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@hanscasteels

Having an appointment with a medical oncologist tomorrow. I hope to have some cribriform answers then, but if not, I am prepared.

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@hanscasteels
I am a Prostate cancer patient of exactly one year.

I've had the PSA, Digital exam, MRI, Biopsy 16 tubes, PET SCAN, Brachytherapy 25, IMRT Prostate Radiation in 25 fractions, and 10 months of ADT/ORGOVYX.
Iam Stage 4, Gleason 9, RADS 5. and I'm probably forgetting something.

Throughout it all, I have never heard the word "Cribriform" but now I'm seeing it often online.
What's up with that?
I look it up, and I'm thinking that my cancer cell architecture is of another design?
Am I right and why is it important?
PAUL

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@stevecando54

For me, knowing my stage 4 is not going away, has become easier to accept. I do feel for the many whom have a chance that theirs will be cured. I would have such a hard time dealing with that with all the anxiety that comes with always wondering if its coming back. So many stories of being okay for years, then "Houston we have a problem". As I look at this posting, I'm not sure I'm saying what I intended to say, but I do feel for those that are constantly wondering about their outlook. Best to all.

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Steve, you said it perfectly! I felt all my anxiety drain away when my RO told me that I needed SRT and ADT…but now that it’s over, the cycle has slowly begun again with doubt, what if’s and WHEN?? It never ends no matter how much you accept it or rationalize it. Guess I better keep those ‘big boy pants’ pressed and ready to go if this crap comes back again. Great post, bud…
Phil

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