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Questions I should have asked about prostate cancer, but did not
A cynical, slightly pissed-off handout for the newly diagnosed.
Congratulations ! You’ve joined the club no one wants to be in.
You’ve just heard the words “You have prostate cancer,” and now your urologist is talking at you like a malfunctioning PowerPoint presentation. You’re nodding, blinking slowly, trying to remember how breathing works—and suddenly you’re being booked for scans, shots, maybe surgery. I regret that I didn't, because I thought, "Who am I to discuss approach and strategies with a physician who does this for a living" ( I had no clue that recommendations of physicians also influence said physician's ability to pay his or her monthly mortgage)
This isn’t the time to be polite. This is the time to ask the uncomfortable, un-rosy, deeply cynical questions you should be asking. The ones that will actually help you make a decision you won’t regret when you’re lying awake at 3 a.m. wondering if this is your life now.
So here it is: the handout they should have given you. Full of uncomfortable truths and questions that pierce through the gauzy medical fog.
🧨 THE “OH S#!T” QUESTIONS
1. “How bad is this? Give me the version you tell your doctor friends at the bar.”
Skip the pamphlet language. What’s my actual risk of dying? Of permanent side effects? Of this turning into something fatal? I want straight talk, not curated optimism.
2. “What if I do nothing right now?”
What happens if I wait, monitor, or tell the cancer to take a number? Is this an emergency or just a really persistent squatter in my prostate?
3. “Are you suggesting this treatment because it’s best for me or because that’s just ‘what we do’?”
Am I a person or a protocol? Is this truly personalized medicine or a flowchart labeled “Gleason 7, age 67, slap with hormones”?
🔬 THE NITTY-GRITTY CANCER-NERD QUESTIONS
4. “What’s my Gleason score and what does it really mean?”
Especially if it’s 3+4=7 or 4+3=7. There’s a huge difference. One is “might be manageable,” and the other is “hold onto your butt.”
5. “What does the presence of cribriform pattern tell you?”
Cribriform = architectural chaos. It’s associated with more aggressive disease, poorer outcomes, and a higher risk of spreading. If I’ve got cribriform cells, I want to know if that changes the game plan from “moderate concern” to “get the nukes ready.”
6. “What about perineural invasion?”
That’s cancer cells getting cozy with the nerves. It’s like burglars figuring out the floorplan. It doesn’t always mean metastasis, but it sure makes you wonder if this thing is already scouting for exits. Ask if this increases your risk and if it changes treatment recommendations.
7. “Should we be doing genetic profiling of my tumor?”
If your doctor shrugs, ask again. There are tests (like Decipher, Prolaris, Oncotype DX) that assess how aggressive your tumor really is. They might tell you whether you need the full medieval treatment—or not.
Also, ask if you should be tested for germline mutations (BRCA1, BRCA2, ATM, etc.), especially if you have a family history of prostate, breast, ovarian, or pancreatic cancer. Some mutations = more aggressive cancer and possibly different treatment.
💀 THE “DOES THIS MAKE ME A ZOMBIE?” QUESTIONS
8. “What happens to my quality of life after this?”
And don’t you dare sugarcoat it. Will I still want sex? Will I be able to have sex? Will I feel like myself? Will I lose muscle mass, confidence, sleep, or the will to live?
9. “Will I regret this in a year?”
Ask to speak with patients who’ve gone through the same treatment. Preferably ones who aren’t on the clinic brochure. You want the raw version, not the testimonial from “Steve, 68, who hikes every day and glows.”
💰 THE CYNICAL CAPITALIST QUESTIONS
10. “Who profits from this decision?”
No, really. Is this radiation center owned by the same group making the treatment decisions? Is someone getting a kickback if I go on certain meds? If you think that’s paranoid, congratulations—you’re finally thinking like a patient who understands the system.
🧩 THE “WHO’S STEERING THIS SHIP?” QUESTIONS
11. “Do I have a case manager, navigator, or a human being who understands how lost I am?”
Because, guess what—oncology is a maze of specialists, insurance traps, and vague assurances. Get someone who can help you herd the cats.
12. “Can we build a treatment team that includes a cardiologist, urologist, oncologist, and maybe a damn therapist?”
Especially if you’ve got preexisting health issues (like, say, a heart condition) and are now being handed hormone therapy like it’s candy. These meds mess with more than your testosterone—they mess with your heart, bones, brain, and metabolism.
🛠️ BONUS: RED FLAGS TO WATCH FOR
Any doctor who says, “Don’t worry, you’ll be fine” without backing it up with actual data.
Anyone who brushes off your concerns about side effects like they’re quaint little inconveniences.
Being told you “don’t need to know” about genomic testing or tumor markers. You do.
One-size-fits-all treatment plans that sound suspiciously like conveyor belts.
FINAL WORDS FROM A GRIZZLED VETERAN OF THE PROSTATE WARS
If I could go back to Day One, I’d have brought this list, a tape recorder, and a friend who doesn’t let people off the hook. I’d have asked tougher questions, made fewer assumptions, and treated every recommendation like a used car deal: with skepticism, curiosity, and a readiness to walk away.
Because this is your body, your life, and your future. Everyone else? They go home after your appointment. You’re the one who lives with the consequences.
So ask the damn questions.
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Good list. While it didn't affect my outcomes, I think I'd have been less frightened at the start if I'd known what to ask.
The one question they probably can't answer is how long you have. Either they'll give you a scary answer based on badly outdated mortality figures, or, if they're honest and up to date on the latest research, they'll tell you it's too early to know, with all the new treatments available — ask again in 5–10 years, when they've had time to collect, analyze, and publish the data on us. 😕
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3 Reactionsor they should say, we don't know how your body will react and for how long. Every body is different.
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7 ReactionsDefinitely a good list. Since having radiation and ADT I've learned a lot more and if I could go back I would also ask:
1. What is the machine on which I'm having radiation at your satellite campus. How old is it?
2. How long have your dosimetrists, physicists and mathematicians been planning courses of radiation?
3. Why are you recommending this specific type and course of ADT? What are some of the other choices?
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4 ReactionsIndeed. I did ask those questions as well. I never got an answer. I subsequently found out that the hospital administering the zaps uses linear accelerators. I found out because I looked it up. And professional competency, at this cancer centre, is just to be assumed. I asked how many brachytherapy sessions the brachytherapy dude had done. I asked which isotope they were using. Still waiting to find out. That’s why I am stuck with endless questions. And being told to “trust the system”. Bollocks.
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3 ReactionsI wish I had this list last April when I was talking to my doctors. I did talk to seven doctors before my treatment and I did ask many questions. However, I did not have the type of knowledge I do now after being on this forum for 9 months. Thx to Hans & everyone on this forum for sharing their journey.
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3 ReactionsThe noble prostate procession—like a relay race, but instead of batons we pass along MRI reports, biopsy scores, and a well-worn list of urologists who don’t cancel appointments for golf.
You're absolutely right: if we don’t share our stories, how else will the next poor soul know the thrilling rollercoaster of PSA levels, the joys of hormone therapy-induced hot flashes, and the eternal mystery of whether that pelvic ache is something or nothing?
It would be a crime against wisdom not to prepare the next generation for their eventual induction into the Brotherhood of the Biopsy. We are the grizzled sages now—our scrolls are PDF test results, and our campfire tales involve catheters and constipation.
Let’s not rob the future of our hard-earned enlightenment. After all, who else is going to explain the difference between “watchful waiting” and “active surveillance” without using interpretive dance?
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3 ReactionsIn a last ditch attempt to make you feel better - (but not necessarily to stop writing! ), I met a man in the locker room who was having radiation for prostate cancer at the same time I was.
This was at the renowned Sloan Kettering Cancer Center. He was a regular guy - a plumbing contractor, so he was a rich, regular guy - and we became very friendly over the course of treatment and even had dinner with our wives when it was all over.
Interestingly, he really didn’t do any research, question the doctors or even know his PSA or Gleason scores. I had to play charades with him and use street language (Did they put you in a big big scary tube with a lot of noise? Did they put pellets up your ass for about an hour?)
in order to even understand why he was there and what treatment he was getting.
After a few meetings I learned that he was a Gleason 3+4 and had some aggressive cells in his biopsy. Never did find out his Decipher.
But his treatment, Hans, was exactly yours. ADT/brachytherapy/ radiation. The only difference was 6 months Orgovyx as opposed to 18(?) months for you.
So even with all the fancy US tests and trimmings, his dietary counselor, his Physician Assistant liaison and weekly Q&A sessions with his RO….his treatment was almost identical to yours, dogmatic, orthodox and hopefully, lifesaving…
Phil
I learned to live with it, Phil. The answer to the question “was it enough” will be answered later. And yes, 18 monthly firmagon pricks. Apparently, it’s “as aggressive as it gets”. The “Alpha” of treatments. Still, I have a hard time convincing myself it was enough. We all have our demons I guess.
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1 ReactionI was going to dive into each of the issues you brought up, but that would’ve taken just as long. Instead, just the highlights:
> Much of this has to do with how one handles decision-making with major life choices. With me, I dived headlong into investigative mode, using my doctors inputs as another source of information. In the end, it was up to me to wrap it all up into a nice little package that I could use to make a treatment decision.
> After being told that I had prostate cancer - which in hindsight he could’ve done a bit more eloquently - My first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, it was about self-advocacy and shared decision-making.
> I always kept in mind that doctors (and medical teams) are human beings, not gods; they’re just people like you and me. They are just people working in an occupation they have an aptitude and passion for; but, they’re not perfect; they’re human, with human frailties; they sometimes make errors. (No different than you or I who were very good in our individual careers and the teams we worked with, but we weren’t perfect.) They have lives to live, spouses, vacations to take, student loans to pay off, and on and on and on…… And, they’re not always right; no one doctor knows everything; they only know as much as they’ve learned and experienced. Whatever they tell you, accept it with some cautious and informed skepticism (and optimism).
> It’s always the time to be polite. And yes, it is the time to ask the “uncomfortable, un-rosy, deeply cynical questions you should be asking.” But, it greatly helps if they’re informed “uncomfortable, un-rosy, deeply cynical questions.” Do your homework; keep a journal; ask questions; get referrals; become a “student of prostate cancer.” Whatever your process is for making major life decisions, put that into full gear. You’ll (probably) sleep better.
> I didn’t get too bent out of shape over my 7(3+4) vs a 2nd opinion 7(4+3). (I simply added Eligard to my treatment plan.). I understood 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 another pathologist’s educated, expert opinion of what is seen in the tissues under a microscope - and carries no more weight than the 1st (or 3rd) 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.” Again, the final call was mine as to which to use (3+4 or 4+3); I made that call as well.
> 5 & 6. Those are important questions to ask about - if they come up in a test: cribriform pattern, extracapsular extension, perineural invasion, seminal vesicle invasion, etc. Always ask informed questions.
> It’s important to know the difference between biomarker (genomic) testing and genetic (germline) testing. And there are different types of testing within those two types. Understand those differences, what’s appropriate for your diagnosis, which your doctor/facility does, and which your insurance will cover.
As for who’s steering this ship? You are! This is all about self-advocacy and shared decision-making. The final decision is always (always) yours; not theirs.
> ask questions (sometimes the right answer is “I don’t know”.)
> be informed
> ask more questions
> keep a journal
> ask more questions
> stir and repeat……
As you summarized quite well —> “Because this is your body, your life, and your future. Everyone else? They go home after your appointment. You’re the one who lives with the consequences.” It’s your call.
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5 ReactionsVery well said and a good representation of how I feel about the system. Getting batted around like a badminton birdie without a point person. I would think you would have to be in a hospital system to get the desired support. I'm currently in a private urology practice that I am looking to escape from.
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