Emotionally concussed with conflicting info: Hans strikes again

yep- that was me a year ago- and I am sure so many others...and the doctors are busy and really dont want to spend an hour discussing possibilities...and in a way, I dont blame them..so we google and AI and finally find a prognosis scenario we can live with and are ok for a bit...then cycle repeats...am I wrong ?

As a retired computer scientist, this is one aspect of prostate cancer that suited me. When I injured my knee (twice: 1995 & 2018), I had no time to research, ask questions, get 2nd opinions, etc. Being in excruciating pain, I just wanted my knee fixed and the pain gone. When I injured my back (in 2012), I had no time to research, ask questions, get 2nd opinions, etc. Being in excruciating pain, I just wanted my back fixed and the pain gone.

But, when I was diagnosed with prostate cancer (in 2012), I had time to wait….. sit back, relax, open up my laptop and read about this new thing that I knew little about. (When I was diagnosed with prostate cancer, 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……”.)

As I mentioned, as a retired computer scientist, I spent every day of a 28-year career researching data, “…gathering information, understanding the threat, regaining control…,” “drinking from a firehose,” and finding solutions to unfamiliar problems.

I have spreadsheets documenting all of my PSAs (ever since my first PSA in 2000), PIRADS scores, Gleason scores, PSA Doubling Times & Velocities, and more. And I’ve maintained a journal (that’s almost 60 pages long now) of what I learned and when, decisions I’ve made (and why I rejected others), and other odds and ends of notes.

Though it’s probably an illusion, for the past 14 years of my prostate cancer journey, I’ve actually felt that I was in control - nothing to be terrified about. Just follow the data….. The data helps provide certainty - at least as much certainty as one can find anywhere in this uncertain world.

As it turned out (with a Gleason 6), I chose to go on active surveillance (against my urologist’s recommendation), and was on active surveillance for 9 years, buying me time to calmly dig through what might appear to be contradictory information, but was simply a matter of understanding the data and separating the wheat from the chaff - which is what I had done every day of my 28-year career (but not in medicine).

Rather than earning an honorary degree, I call it “becoming a student of prostate cancer.” And as for being terrified, I recall the old quote - “The only thing we have to fear is fear itself.” No fear; no sense of being overwhelmed.

Five years ago yesterday, I had finished my 18th of 28 proton radiation treatments, and was well on my way to ringing the bell. Now 5 years later, today is just another day……

Thanks for that link to Han's substack page.
Yeah, he makes some great points, and he's a witty writer, quite enjoyed it.

@xahnegrey40 I'm with you all the way. I will say that the amazing people on this forum have been so helpful and such a lifeline during my early phases navigating some really challenging times.

I am so indebted to all of you. So many good hearts out there.

@brianjarvis You are so right about having time to make the decision...but the pressure to make a decision quickly is a powerful force. And, you really do have to fully understand each treatment option and figure out if it fits your pathology. So, that makes it like you have to get your own mini-med school education or you end up like a leaf in the wind, relying not on your own judgement, but the viewpoints of people who clearly have bias.

Meaning, docs have bias toward their specialties. People on the forums tend to have bias based on their own experiences. I also ran into so many people who are violently opposed to surgery as a good option.

In the end, I based my decision on my diagnosis profile and which treatment made the most sense to me. But, I hope to reach your level of zen someday!

@sandguy I always appreciate a writer who can distill this crazy ride with a twisted sense of humor at the same time.

@fritzo One of the first things that became apparent to me as I began diving into details about prostate cancer is that there is no pressure to make a decision quickly. (I’m often shocked when I read in this or other forums a guy write (something like) “…I was diagnosed with prostate cancer last week and I’m having my prostate removed next month…”

As for understanding the treatment options. We’re not trying to understand the molecular biology of what happens with each treatment. My urologist (a surgeon) explained the details about prostatectomies; I requested referrals to specialists in other treatments, and he provided them: focal therapy, brachytherapy, SBRT, photon, and proton. In-between those appointments, I was studying up to have a list of questions to ask. I only had to know enough to ask the questions; they filled in the blanks.

I compare it to buying a house or a car. Now, I know absolutely nothing about building a house (or a car). But, I know enough about reading about them to know what questions to ask, and as the questions get answered, I more fully understand the treatments (and ask more questions), as well as understanding what I like and don’t like about each treatment.
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@fritzo Though I referred to it as becoming a “student of prostate cancer,” I also look at it like cramming for a final exam, and yes, getting my own mini-med school education. (To quote from the movie Stripes: “Didn't you ever cram for a test before? I learned two semesters of geology in three hours.”)

Again, the treatments themselves are not complex to understand. Though you wouldn’t want me to operate on you with a DaVinci robot (I’ve had my hands on one before), I do understand how they work, the benefits when compared to open prostatectomies, and the side/after-effects that are likely to happen. I understand the same about each form of treatment. Based on that, I would incorporate my doctor’s advice and recommendations with my own judgement (as well as incorporate others’ opinions, despite their biases which I would determine as to whether they were information-driven biases or emotionally-driven biases)
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@fritzo Yes, docs have bias toward their specialties, not for some surreptitious reason, but because it’s worked successfully for them. I can work with that; that’s the most valuable information I could use - an honest, straightforward, unemotional, experienced-based (biased?) opinion for me to incorporate into my decision-making process.

It’s important to glean from all the information available out there:

> don’t panic; you will see your kids and grandkids again.

> make an informed decision, not an emotional one. (They say that when a close family member dies, that you shouldn’t make a major financial decision for at least 6 months, due to the emotions still being raw; the same should be considered with a prostate cancer diagnosis and treatment decision.)

> prostate cancer rarely kills. (The mortality rate is one of the lowest of all cancers.)

> doctors are just people; they’re not gods; they’re working in an occupation for which they have an aptitude, education, and passion for; but, they’re not perfect; they’re human, with human frailties; they’re not always right. Whatever they tell me, I accept with caution and informed skepticism (and optimism).

Finally, you’re gonna have to live with this decision for the rest of your life; make it a good one.

@brianjarvis Glad you processed all of this so well. I think the big difference vs. other disease proiles is that if you have a heart blockage, they do a stent. You don't have to research the 15 or so treatment options. If you have a bad knee, they replace it. You don't have to explore 20 different procedures. You find a good knee doc and follow their lead.

With prostate cancer, you are forced to learn enough about each option, which you qualify for, the side effects they tell you and the ones they don't, as well as navigating experience of each doctor and then make the decision because the docs don't want to be left holding the bag for the side effect profiles you will be stuck with afterwards.

And mind you, I'm a smart guy who processes lots of complex information quickly. But, in order to make a good decision, you have to navigate a ton of conflicting opinions and advice from docs, patients and your family.