Artist Mark, I do think you have accurately tapped into something...you used the term "lack of honesty," which I don't disagree with, but there are many complexities which make it challenging. I'll add a few comments, and admit up front that I'm not offering any "solution."
First, recognize that PC is a widely varying disease. Some will die. Others newly diagnosed should do nothing more than go home without any active treatment and keep a yearly eye on their numbers and it will never affect them or change their longevity.
Secondly, there are way more of those who should have no immediate active treatment than those who will die...but they all go by the name of "prostate cancer," and there is only one HW/PC "big tent" website...and all are welcome. It often feels like—and some have suggested it should be—multiple different diseases.
Third, due to the fluid nature of social media sites like this, people drop-in and out—sometimes posting once then never again—so the amount of "investment" in each new poster has to be measured. Because of this, I think the "Newly diagnosed—Read me first" sticky thread was a brilliant idea...and could/should continue to be maintained/refreshed. But the point here is that you want to catch the newcomers with enough value/input that they come back, give more specific info about
their cases, and engage in dialogue which allows a more thoughtful, targeted set of responses from knowledgeable peers.
Fourth, having to do with some of those responses... Sometimes they are crap, partly because of the range of the disease previously mentioned which many people don't grasp, but other times some of our veteran respondents simply don't appear to have actually read the details of the OP. I'll give two very different recent examples. (1) A member posting about
her dad with advanced PC and widespread mets to bones was told, apparently in a very generic reply, that PC had "lots of options." That misleading input probably temporarily buoyed her outlook, but probably wasn't helpful. Yes, someone newly diagnosed with favorable-risk has "lots of options;" but that reply must have been given by someone who didn't read or grasp the OP's situation. Her dad's options are, frankly, not zero, but limited. (2) In a thread just yesterday, someone posted about
his 5th biopsy with a
very low risk diagnosis. Someone included in their reply a comment roughly "your life is at risk." That's a rubbish input, obviously from someone who doesn't yet grasp the spectrum of the PC disease. Sometimes I wish there was a rating system for posts..."Tell us if that post is helpful"
So, I have no "solution" to offer. I tend not to sugar-coat bad cases like others do amongst the smallish numbers of bad cases. Even when I've seen other people give an overly optimistic passing comment, I've stepped out and tried to be clear (especially if I sense they are uncertain and would appreciate an honest response) by telling people they have a "challenging" or "difficult" case—these, I remember, were the caring (but clear) words I recall my wife's oncologist using in her own challenging, difficult (eventually fatal) case. But I do find myself often giving "measured" initial responses which I could invest 30 mins to proactively answer all of what I think the OP needs/wants to know, instead I give a short answer and wait to see if they come back...partly because I've personally got other things to do, too, and have to be selective on who to help. Not sure what else to do...
Post Edited (NKinney) : 4/24/2018 12:39:04 PM (GMT-6)