Looking for better ways.

Tony, I really think your forsaking posting of topics would be a loss for the community. I hope you work it all out to your satisfaction, because you have to be comfortable, but count me in as one who is an information junkie (and not in the least bit nerdy ;)), and who gets much from reading the links to studies, etc. The debates that follow teach me so much, and I think they have real value.

We just don't all have to 'talk' the same way about the same things to avoid being accused of being judgmental or rude or whatever else has been said lately.

I just posted this in Sonny's thread "Who are we - What are we doing - Why are we doing it" and wanted to post the same thing here:

O.K., now I've got it back - the reason I continue to stay here is summed up by one of our "relative newbies" MichaelT, on TC's thread "Looking for better ways":

"As a relative new guy, sometimes I feel like I showed up at a cocktail party and all of the interesting people decided to leave. I can only imagine the blood, sweat and tears that many leave on this forum...that's got to beat you up after a while and start to tear you apart. In that sense, I think I understand when it's time to devote energies in other places.

But all I can think of (over and over again) is how when faced with the worst thing to ever happen to me (other than my parents dying), this collective community pulled me up and showed me a path forward. Maybe I can't ask any more than I've already asked of the experienced members, but I'd like to think that the gratitude of folks like me might be a small incentive to stay actively involved in our corner of the world.

Michael"

 

THAT is precisely why I have remained here, and will continue to remain here. As far as I'm concerned the rest of the b#11$h!+ that's going on can, well, keep going - but not with me. No, I will instead stay focused on why I decided to stay with this forum - it's right there in Michael's post.....  Tony - I would urge you to consider this also......

Michael, thank you for so perfectly wording what I have been feeling, and trying to say - in this thread, in my "Disgusted...." thread, and in general. You my brother have rejuvenated me like you'll not believe. I deeply appreciate you reminding me of why I need to be here, to satisfy my "Pay Forward"..........

Tony,

You were the first PC advocate that I ever knew, and I have learned a lot from you in nearly 5 years. I am in the camp, that did not believe that you had any conflict of interest being both a moderator here and having your own views. Personally, I thought you were among the fairest of moderators in my exposures here (no offense to any others past or present).

Like all others, you are entitled to change your views, grow your views, evolve your views as you see fit, this can not be denied. In some of these recent debates about ODOT, I can't say I can embrace your new views, but you know more about these subjects than I ever would. People like you and Ralf have put in the real time out on the PC advocacy floor, so there is always some natural respect.

I have friends in r/l, that we while we disagree about many core subjects - the real test ones - like politics and religion - it never stands in the way of our friendships together.

I would never want to see you disappear from HW, you have earned your place here many times over, but if you feel that starting a new forum along the lines you talked about above, it might be just the ticket with your professional PC involvements, and I doubt you would have any trouble finding others of like mind to help you develop it.

No matter what happens, I will always remember you here, right from my very first days at HW, and feel whatever you do or don't do, you will succeed at it.

david in sc

Oh my. Sorry to see ya go, Ed.
You're a good man and a great photographer. I still think you have been a great contributor. LOL.

Tony

Cowgirl53,
My email is wide open. My heart is out there for you. Dang it and sigh. I hate this disease.

Please reach out to me when you need to and I will help you in anyway I can. Ya gotta give this some more time, and make it positive time!

Tony

Cowgirl, with apologies to Tony since this is his thread, I just wanted to tell you that your story broke my heart...what a horrible thing to go through and how sad you must be over how things have turned out for you and your BF. My husband suffers from complete ED after his surgery, which was more than 5 years ago. I'm here if you'd like to chat about it, or simply need a shoulder to lean on now and then.

Cowgirl,

If you click on my name to the left it will take you to my profile page that has a working email address for me. If you would drop me an email my wife would like to get in contact. I think she wants to share her experiences in dealing with a man who appears to be the second most difficult prostate cancer patient in the world.

Tony,

If you can't get Peter to buy into your idea there may be accommodations we can make within the existing framework to meet some of your goals in seeking a separate space for your advocacy-related discussions.

One of my dogs takes diuretics for a heart condition and she wakes me up an hour before the alarm every morning. By the time I have let her out and gotten back to bed my dammable brain has switched on and I can't get back to sleep. Most mornings I spend the time calculating, to the second, the time when my last Trelstar shot should wear off, but this morning I spent the time thinking about propositions.

In its natural role as a support site we host conversations "between" or "among" people directly affected by prostate cancer. Those who are more comfortable with an impersonal role sometimes speak "to" other members but they should remember that this is a forum for patients and their loved ones, not for representatives of the medical community.

In discussing advocacy issues we are cooperating to craft a message in a larger conversation. That message speaks "about" prostate cancer patients and "for" them but the intended recipient of that message is the world outside our community. I would hate to see you step back too far from the forum because you speak not merely "for" us but "from" us as well and I think that is valuable.

The accommodation that seems sensible to me, if Peter doesn't want to give you your own forum (which seems better) would be to give you a weekly thread for your role as our ombudsman. You could post anything you needed to there and people who wanted to have input to your advocacy role could use that thread to discuss things with you. When you posted a new thread the old one would be locked. Any threads started by other members that address advocacy-related topics would be deleted and the member requested to re-post them as comments on the advocate/ombudsman thread. The intention would be to keep requests for support from winding up at the bottom of page three in 12 hours because we are all busy starting threads arguing about over-treatment (which less than half of the members understand anyway.)

Peter and Tony,

I don't really understand these distinctions and why they're necessary. How is patient support different from advocacy, if the point is to make us all more informed patients and more capable of making our health decisions?

For example, how would you classify the following:

*If I write about my getting a UTI from a biopsy because gut bacteria are becoming resistant to fluoroquinolines, and I think too many of us are rushed into biopsies, as I was, and I think they are being overused...

*If I tell how a Uro tried to sign me up for an opening he had the following week on his DaVinci slot, and note that 90% of men are rushed into immediate treatment, and I advocate that others take their time making this decision...

*If I tell someone that there may be better imaging than his doctor prescribed and where to find it...

*If I point out what I perceive to be the limitations and flaws in a study, or point to other studies with different findings, and I recommend that others bring them to the attention of their doctors and initiate discussions...

I think you are both over-reacting. I know your hearts are in the right place, and you hate to see conflict, and you want to solve what you perceive to be a problem. I think that if someone gets bent out of shape over a post -- let 'em, as long as he remains civil. And if he can't be civil, delete the post and give him a warning. You don't have to react to every squeaky wheel by changing the way you operate. And we all can decide for ourselves which discussions we want to get involved in. If it's too hot in the kitchen, there's a nice breeze and a cold beer on the patio.

- Allen

I agree with T. Allen too. And I would add this: Inevitably, people here will be drawn to different threads. Some are most interested in advising the newly diagnosed (or come here as the newly diagnosed, seeking such advice). Some will be most interested in discussions among those with advanced disease. Some are interested in prevention. Some in "purely support" threads. Some interested in the science, studies, public health considerations, insurance concerns, nutrition, supplements, psychology issues, doctor or hospital recommendations, etc. Some are interested in the most controversial topics and some shy away from controversy. But the great thing about an internet forum is you can read and participate in the discussions you find interesting, and you can just ignore the threads that you don't care about or that just get you upset. So my view is "it's all good" -- so long as the discussion is respectful.

[PS - Tony should participate, or not, in whatever way he likes.  But you can add me to the list of people who thinks he adds a lot of value here and is of the view that "the more Tony participation, the better."]

Tony,
I don't know what to say! "Bud" was the spirit of this forum and it broke my heart when he passed. I guess I think of you as our "guiding light" who always let us know what was going on in the PC world..I realize that you have a very busy/demanding life and regardless of your views (you stated them plainly) you should not be the object of attack. You have certainly given "your all" to members of this forum, but maybe with your credentials it's time to move on--I for one won't blame you.
Bill

Peter said...
The sort of things I think are more advocacy topics than support topics are things like the AUA guidelines for PSA testing. Those are guidelines for urologists and, while it is fine for us to huddle up and form an opinion it is silly to waste thread after thread arguing about it.

It matters to some people more than it apparently matters to you. It's not a waste to them and there's no cost to the bandwidth, so if they want to argue -- what's the harm, as long as it's civil?

Peter said...
I also would like to banish the subject of "over-treatment" as understood by the AUA guidelines committee since it is a pure abstraction that by its nature cannot be applied to any individual, only to populations.

Its manifestation in the support world is due diligence in helping men looking at treatment options make an informed decision based on their risks and benefits. There was a question on the forum -- a survey, actually -- that asked "were you over-treated" and nobody recognized it as a trick question. The concept of over-treatment applies only to populations and it cannot ever be decided on an individual-by-individual basis.

I very much agree about the applicability of research statistics to populations rather than to individuals. But isn't that a good thing to discuss? Not everyone has the background you do to understand that. Probabilities do enter into our decisions. Discussing the AUA (or NCCN, etc.) evaluation of the available research, its implications for our decisions, and the factors that we might want to take into consideration that may be exceptional to their evaluation are all important to men facing those decisions for themselves.

Peter said...
It is interesting as the philosophical/statistical basis for for some otherwise hard-to-understand guidelines that our doctors should consider in treating us but our role in reducing over-treatment is to support men one-at-a-time as they make their decisions and try to show the industry less appalling statistics going forward.

I don't think it's just interesting, I think it's vital, whether we agree or disagree with their inferences. When an august organization like the AUA or ASTRO or NCCN, etc., takes a position on any aspect of prostate cancer, it should get our notice. Their imprimatur -- since they represent some of the most accomplished and experienced doctors in the country -- means a lot. I know I want to understand it fully even if I decide that I want to go in a different treatment or diagnostic direction in my own case. I would not like to see this relegated to the backwaters of the forum.

Peter said...
In support you are talking to, among, or within the patient community. In advocacy you are speaking about, for, and from them. In one you are telling them what they need to know to deal with their disease -- which can be as nerdy as you like -- in the other your are asking their opinions about larger conversations.

I understand the distinction you are making, but I don't think it works in practice. Those "larger conversations" intimately affect us -- we are the objects of those conversations, and they become part of what we need to know in our conversations with our doctors. I think we are just too involved to be able to have an abstract conversation about those issues.

- Allen

Peter, you said above:

"The sort of things I think are more advocacy topics than support topics are things like the AUA guidelines for PSA testing. Those are guidelines for urologists and, while it is fine for us to huddle up and form an opinion it is silly to waste thread after thread arguing about it.

I also would like to banish the subject of "over-treatment" as understood by the AUA guidelines committee since it is a pure abstraction that by its nature cannot be applied to any individual, only to populations."

I couldn't agree with you more. I have often said, that if the experts can't agree on these matters, how would we be expected to agree.

david in sc

As a newbie, and speaking only for myself, I am not befuddled or confused the way things are set up now. I'm on one giant research project about my disease and benefit from ALL of the discussion types, including the political.