We Are so Different

Sorry to hear about your friend. Based on my experience, better to know so we can advocate: (1) I got to ADT/SRT months before my surgeon was going to even see me, despite persistent and slowly rising psa, and (2) when the CT scan showed a nodule on my thytroid, I had to ask the RO if it should be checked (he said,”Oh yes I recall that I did see that, yes it should be checked”) — biopsy showed it benign.
And that is two really top practiitioners at a top facility — I would suspect that it may be worse at other places.
Underscores the need to be our own advocates and to know as mch as possible from reading the studies and the posts from insiightful people on HW.

Just to be clear, I was being facetious about wondering which way is better. I agree with you both. Clearly we are better off. Especially with a disease where there is little black and white and so much grey,

There's a doctor in town who doesn't remember his gleason score. He's a good gut doctor and a cool guy. He does my colonoscopies. I get the impression....for some reason I can't remember how I got it....but I somehow got the impression he was a G6. The same doctor that operated on me operated on him. hmmmm……..

and I have another friend who's on hormones and doesn't know what his gleason was.
I like the guy. He doesn't know much about his disease...but there's something compelling about this guy's attitude....and I don't know what that is. It's not like he doesn't know it's serious. He does. Maybe it's that he doesn't know or care that much....I can't put my finger on it.


As for myself....I was watching prostatectomies on YouTube to see just how much IQ it would take to do one....then tried to judge my surgeion Lol

Read the book Flowers for Algernon or see the movie "Charly" based on the book...staring Cliff Robertson...I bring this up a lot on the forum...when ever the whole ignorance is bliss schtick comes up...which is often...I won't even go into the the whole we are wired different bull...such crap...of couse we are and we also mhave the power to change that wiring..except we use it for an excuse to be mediocre and borg-like...but like good ole Charlie Brown...I will nevah stop tring to kick the football...hows about y'all...never mind...go along to get along lil doggies...my comfort is I have great company in my silly pollyanish and quixotic quest...any body got something they would die for...much less live for...stay silent in your Nichodeme-an...after midnight stance...look out they might get ya...Bah Humbug Christmas in July...save the lies...they already believe ya...lockstep...Hippity Hop to the barbershop...er..ah thanks for the ear fo my vent...shh...shh...I wont tell...

Clearly, we are different, the proof is the relatively small number of active folks on this forum compared to the entire population of PC folks. I have a friend who knows nothing about his disease other than he had a RP. I also have a friend who is a G9 who is letting the docs lead his journey.

I will say, at times, I wonder if I am too deeply involved in learning about this disease versus accepting where I am at? Particularly at this stage of my journey. However, this is my style, I dive in head first into every adventure I take. For me knowing or learning is something I can do to be ready for the whatever is next.

Research and details are important to me, it's just how I roll. In stressful situations, knowing more helps me to be more relaxed. I always like to know the options and my preferred choice even before seeing a doctor. My wife teases me about it, but it is simply the way I am.

My dad on the other hand, not so much. He had an RP at age 72, recovered fine. A few years later, I asked him about his details when I was diagnosed. He knew almost nothing. He said the doctor told him there was some cancer in there, and it had to come out. He said ok. So, surgery. That's it. (I asked about radiation, but he had pretty major BPH already with urinary issues, and the doctor did say due to that radiation wouldn't be a good choice for him.)

Another guy I met (through a local general cancer support group) had some kind of cancer in his abdomen. His English language skills were pretty good, but his heavy French accent made it hard to make out technical words. But really, he had no idea what he had, what they were doing about it, and actively didn't want to know. He said as far as he was concerned, he's normal and life goes on until it doesn't (quintessentially French "c'est la vie" attitude). His wife handled everything medical. So, "Go see this doctor", he goes. Doctor says, "Do this thing", he does the thing. Otherwise, actively avoiding any knowledge.

People vary from one end of the spectrum to the other.

Pratoman said...
I spoke with a guy today, who had surgery 6 months or a year before I did. And like me his PSA became detectable at the 2 year mark. He was G7(4+3) and he had genomic testing done on the tumor which came back as high risk . But his PSA rose quickly, unlike mine, it was .34 within months after it became detectable, and he started SRT with a PSA of .4. His RO did NOT recommend Hormone Therapy. (I don’t get it). She was a local RO at a private practice.

I don’t know him well, he is a friend of a friend, and our mutual friend asked him to give me a call.
In our conversation, it was apparent that he didn’t know much. At one point he said “you know a lot, I guess you do a lot of research. I just trust my doctors and do what they say.

I think the majority of people are like him, more than like the folks here.
Sometimes I wonder which approach is better, maybe ignorance is bliss. But man, we are so much more we’ll equipped than the gen pop, to deal with this stuff.

Just sayin...

As an aside, I sort of wish he hadn’t called me. He was totally continent after surgery, a year after radiation, he wears pads and a penile clamp.

Well, that is not good to hear about.

But you are right. I know 1/2 dozen guys locally who have had PC and treatment for it, and I don't think any of them even has a rudimentary understanding of things relating to this disease and it's treatment. Just whatever their urologist has told them though quite a few did some how get routed into RT as primary. But they have no idea what a Gleason score is or anything else. Are we better off?

Well, in some cases, no doubt we are better off. If you are a low volume G6 who a surgeon is offering to cut on without discussing other options, then you are much better off if you know what folks here know. IMO.

Post Edited (BillyBob@388) : 7/19/2018 8:19:12 AM (GMT-6)

I'm a little bit afraid of the game of golf. That's why I don't play. I've watched the the game devour members of my family. They are ordinary people leading well-balanced, if slightly unexciting lives and then they are invited out for a round of golf and they never think about anything else again. At family reunions at the beach, while I am out walking on the beach, ogling the young women and quietly humming "The Girl from Ipanema", they are sitting in the condo watching The Golf Channel on TV.

If you think about a quality-adjusted survival metric I do think there are populations of men with prostate cancer who would be better served if we simply reassured them about trusting their doctors. One group is the compulsive worriers -- the borderline hypochondriacs. For them knowledge isn't power, it's another bar in their cage of worry. What good is it, really, to add another month to your life if you spend a year making yourself miserable about your disease. Another group I worry about is those who simply lack the intellectual skills to understand the parameters of their disease. I worry particularly about individuals who fall in both groups. I worry that they will pick up on the fact that we sometimes disagree with the advice of the medical community but won't get any of the reasons why. We will have set them up as easy targets for other Internet cancer sites that share our occasional dim view of conventional treatments but offer simpler stories about alternatives. Not only will worry have reduced their quality of life, but by relying on their own limited intellectual skills, as opposed to simply trusting their doctors, they may shorten their lives as well.

Most of us here are prostate cancer hobbyists. We find the research soothing. It lets us step outside of the problem the disease presents to us personally. We're information junkies. But, like Prato says, we're sort of unusual. Not everyone is like that. I suspect that many of our one-and-gone posters aren't. When conversing with new members, especially before I get a sense of them, I am very reluctant to say anything that sounds like a criticism of their doctors. I always try to present information as additional opportunities they might want to discuss with their doctors.

Some people are a puzzle, a riddle and an enigma, rolled into one. I'm neither of those, but to the frustration of many, I'm a fanatic, a perfectionist and a purist, so I research EVERYthing and I place trust in very few. Its almost pathological, and I suspect it arises from something I once heard my grand-dad say to my dad back when I was a kid. They were playing pool together down in the basement (circa 1956 in Detroit), talking about an upcoming medical appointment for my mom, and he said . . . "keep in mind that 50% of all physicians graduated in the lower half of their class."

Once I got over the shock of having cancer, the treatment decision process was another research project. Once I learned that for my particular diagnosis, many modes of treatment have similar results, it became much simpler. Do the research, prepare an hypothesis, prove or disprove.

Of course, I had already been through similar processes for a couple or three other medical issues, some of which were much closer to life-threatening than my particular PCa.

Add me to the list of men who need to know a lot about our issues and want to be involved in all the choices in our medical care. I was the same way when my mother was diagnosed with bladder and kidney cancer. Her oncologist fielded my questions, but eventually asked me "Are you an MD? Your questions make me think so."

I am enjoying this topic and largely agree with Pratoman regarding my own approach: "the quest for information, is, at least for many (maybe me) partly a quest for control."

That said, I really can't speak for other but I have made some observations based on a few anecdotal experiences. For example, I get the "surrender to authority" approach. My father was a career military officer and I was raised under that philosophy be the authority the government, the church, any adult, the boss, etc. I was a teenager during the 1960s and was impacted by the whole "question authority" movement of the times which coupled well with my incessant curiosity about how things work.

When my dad had his own battle with cancer (renal) and heart disease, he acquiesced to the authority of the medical community because that gave him comfort. I thought his primary doctor was incompetent but questioning that authority figure caused my dad more stress that was healthy for him.

I think about how this works outside the medical realm. Do we seek to understand the inner workings of other things in our lives when faced with "treatment" decision? An example might be our automobiles, computer, or even our household plumbing. I, of course being who I am, tend to DIY but when I can't I certainly gather all the knowledge I can so I can at least understand what the hired help is doing. Other just prefer to "write the check" and receive the treatment.

I have a friend who I have helped for years with his various computer problems. He's been the victim of two ransomware attacks. I told him that he really needs to learn a bit about how a computer works which would better help prevent these problems. His answer was "I don't want to have to know anything about it, I just want to use it."

I think that extends to how how many people approach their own bodies. They just want to use it and even a life threatening malady won't change that attitude, but for some it will.

InTheShop said...
We're so different because we're not the same.

I am. But I'm the only one. Everyone is different except me.