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Posted 2/14/2013 9:17 PM (GMT 0)
Newcomer fear & hysteria, yes, absolutely.   Rampant.  You should read some of the HW newcomer thread headlines: ·          I feel absoulutely [sic.] overwhelmed and very much behind the power curve on this. ·          We (I'm worse) are scard [sic.] to death now. ·          Husband just diagnosed and we are both very frightened   Scan the headlines for yourself...   Maybe it’s because it seems like it’s just Dr Casey’s words, Mel & F8...? Maybe the Mayo Clinic said it?  Oh, bam, they did:   “When you receive a diagnosis of prostate cancer, you may experience a range of feelings — including disbelief, fear, anger, anxiety and depression.”   LINK What if it was Dr Klotz’s words?   LINK (Klotz:   “ A diagnosis of cancer often results, at least initially, in “cancer hysteria”—that is, a perfectly understandable reflexive fear of an aggressive life-threatening condition . ”) What if, Mel, it was your doctor’s words, Dr Scholz instead of Dr Casey?   LINK   (Scholz:   “Yes, there’s fear, and Dr Brawley already mentioned that there’s a tremendous overlay of fear with that word “Cancer” because most cancers, pancreas cancer, lung cancer, even colon cancer, are so very deadly.   And there’s enough of that going on in the general population.   People know that, and they assume that prostate cancer, being called “cancer,” is equally dangerous.   And it’s basically not true .   There are fatal forms, but even the bad ones usually take more than 10 years to cause mortality, and those thankfully are in the minority.” ) I could go on…but won’t… Every one of the doctors worth their salt recognizes and talks about the fear and "cancer hysteria" that grips newly diagnosed PC patients, and the chart I posted in this thread (the "visual aid" in my last posting) helps to visualize exactly why it is so unnecessary for so many of the newcomers... Post Edited (Casey59) : 2/14/2013 2:20:49 PM (GMT-7)
Posted 2/14/2013 9:27 PM (GMT 0)
Casey - maybe you're just cooler than everyone else. Or maybe not.

Feeling overwhelmed and scared is not a hysterical reaction to finding out you have cancer.

Those are perfectly logical, rational and human responses.

Posted 2/14/2013 9:56 PM (GMT 0)
Maybe you speak a different language. I'm saying it isn't "hysterical. And that characterizing peers as hysterical is also not very friendly. Maybe if I post this in green font it will make more sense to you?


hys·te·ri·a
[hi-ster-ee-uh, -steer-] Show IPA

noun
1.
an uncontrollable outburst of emotion or fear, often characterized by irrationality, laughter, weeping, etc.

2.
Psychoanalysis . a psychoneurotic disorder characterized by violent emotional outbreaks, disturbances of sensory and motor functions, and various abnormal effects due to autosuggestion.

3.
Psychiatry. conversion disorder.
Posted 2/14/2013 10:41 PM (GMT 0)
You said almost, almost , exactly what I said, above.   You said: davidg said... Those are perfectly logical, rational and human responses.   What I said Dr Klotz said, was: Casey59 said... Klotz:   “ A diagnosis of cancer often results, at least initially, in “cancer hysteria ”—that is, a perfectly understandable reflexive fear of an aggressive life-threatening condition . ”)     Almost identical...but Dr Klotz's comments carry a bit more credibility.       Post Edited (Casey59) : 2/14/2013 3:44:24 PM (GMT-7)
Posted 2/14/2013 10:59 PM (GMT 0)
Are you serious, Casey? what are you six? deleting your post and reposting so it's last? why not trying it in red or purple at least?

"hysterical" is an awfully judgemental way to greet and/or judge people who ar ehaving a perfectly reasonable reaction to a cancer diagnosis. I've never seen anyone hystercial here. Maybe you just have communication issues when cloaked in anonimity and would do much better in person.
Posted 2/14/2013 11:04 PM (GMT 0)
My mistake for taking you off "Ignore" and responding to you.  You are a gnat.  Back to "Ignore.""
Posted 2/14/2013 11:07 PM (GMT 0)
Casey, you need to learn how to be social.
Posted 2/15/2013 2:00 AM (GMT 0)
Hysteria may not be the best choice of a description of what happens in a cancer Dx, but it's close and fortunately doesn't last long.
There has been a lot of research done on how the brain reacts to a major change, and it happens in the same way, to all people all of the time. The only difference in people's reaction to a major change is the time necessary to process it. In some it takes a second or two and in others it may take months or years.
First the brain reverts to its reptilian state in which it cannot process information in a rational way. We have all experienced this when someone said something totally unexpected and we were shocked. Only later we think of the many ways clever ways we could have responded. When in this stage, giving information is counter productive as it cannot be processed.
The primary experience is loss and our main focus is self protection. We have feelings of fear and our behavior is paralyzed. We are unable to process information in a rational manner. We initially develop a "victim" mentality. In time we move to anxiety, confusion, feeling overwhelmed. This is the stage we find many of the newly diagnosed patients posting on this forum. The next stage, discovery, is where we have uncovered enough information to make decisions and focus on solutions.
As I said everyone goes through the exact same process and the only difference is the time to move through the stages; some get stuck in the different stages for quite a while, others move through them relatively quickly.
Knowing that most of the new patients we are seeing here are in stage 2 and are beyond the "Hysteria" or "reptilian" stage, they can be best served by giving information to get them to the discovery stage.
Posted 2/15/2013 3:02 AM (GMT 0)
These threads drive me insane. 3 - 2 - 1 to being locked... btw.

Until there is definitive proof that G6 doesn't progress gradually to G7, G8, G9 or G10 as a natural course, people better seek treatment of some kind at some point. If that means taking a year of two or five to decide under the guidance of an experienced uro and/or onco, so be it. But make the best choice for you given what experts say... not what a bunch of arguing goofs on an internet site claim... even with internet links to back it up. Experts probably know better.

Frankly, I'd rather see Casey, JohnT, davidg, and a couple others line up and pee for distance. That way we could declare a winner and be done with it.

AS still, no matter what some might say, still has a component of Russian Roulette about it; as does any other treatment. You make your decision and go from there; hoping for the best along the way. For Pete's sake.
Posted 2/15/2013 1:34 PM (GMT 0)
I too can pee like I was 12 again. It was one of the few "fun" things about this surgery. Sometimes when I'm in th eoffice bathroom I can here my colleagues huffing and puffing and straining to pee ( the older guys) but I walk up to the urinal and spray like a little kid again.

I agree with your sentiments. It was precisely my point. This is great forum though, some of us rub others the wrong way, and their is no doubt some politics and paranoia about medical professionals here, but overall I think it's a great tool. However, to be honest, I am thankful that the first significant forum I found right after my diagnosis was YANA and not this one (which I found much later). Some of the petty stuff that goes on here is certainly not helpful for someone at that stage in his journey.

In my worthless opinion, Casey means well. You can see this with his workout stuff. He just has what I consider poor social skills on this particular medium, perhaps too much zeal, and this often translates to very judgmental and harsh characterizations of the very people he is supposedly trying to help. I think sometimes people forget that there are no hierarchies in our world. Us PCa folk share a psychic unity in many ways. Anthropologists have talked about such phenomena. When you create a hierarchy which includes boundaries and judgements it can be of less benefit to new brothers. But I think that overall the benefits one may find here greatly outweigh the issues that people like Casey or myself might introduce.

Last thing, your dead right about some people here providing medical advice. I think that is very dangerous for the benefit of the original poster and perhaps even for the owner of this site. At the same time, there is no replacement for the value of members fo this forum sharing their personal experiences.


questionaboutit said...
I don't spend a lot of time here anymore and I never refer anyone I meet with PCa to this forum because of Casey's and others' anti-treatment crusade. It is extremely dangerous and every post that tries to steer patients away from any form of treatment should be deleted. Cancer in any form is dangerous and no untrained amateur should be allowed to call sick people hysterical and suggest, or even hint, that anyone should listen to some non-professional and anonymous poster rather than a doctor that actually knows their case. Some poor guy may click on here once or twice and think the casey actually has the expertise to be handing out medical advice to cancer patients.
This forum claims to be for support. Calling people hysterical is not support, telling people that their doctors are wrong or money hungry is not support. Posters need to stick to telling their case histories and offering support and leave treatment advice to medical professionals. The moderators need to bring down the ax on the self proclaimed experts that toss out dangerous medical advice, even if it is in a colored font.

As for the peeing contest, after my RP I can't go for distance anymore but I am a contender for voiding speed.

Posted 2/15/2013 3:12 PM (GMT 0)
agreed.

When I first got my news I immediately went online and came across a lot of bad information. If I were to believe what I was reading, I had 10 years to live, guaranteed ED and incontinence. Here I am now, told I am "cured", 100% potent as before with zero urinary issues.

At the time my urologist, surgeon, and friends and family all warned me about the Internet and advised to stay off of it. I was basically told the Internet was full of nutcases, poorly informed unqualified people, and only people with negative stories. Although this is true to a great degree, there are also a lot of fabulous resources online. The problem is not stumbling across the noise online those first few weeks.
Posted 2/15/2013 3:47 PM (GMT 0)
Yeah question and davidg you're all correct. Enough of this AS nonsense. When a guy is diagnosed with PCa they should jump on that gold standard radical prostatectomy asap, before 6 weeks if you can. All those recent studies about over treatment are all wrong. My god people if cutting out all our prostates can save one guy it's worth it, isn't it? Now that's settled lets turn back the calendar to 2007 so this thread can factually find its home.

Post Edited (Ziggy9) : 2/15/2013 8:50:30 AM (GMT-7)

Posted 2/15/2013 4:07 PM (GMT 0)
my ego?

or did someone post and delete again?
Posted 2/15/2013 4:20 PM (GMT 0)
Oh I see, Ziggy. Couldn't see his post while logged in.

That's ironic actually. When i first posted here Ziggy greeted me by telling me I was a fraud, a pawn of my surgeon and not an actual patient. Believe it or not he and a few others also chased away three legit brothers (whom i know) because they were also accused of being frauds. All people posting about their success with surgery and defending a world class surgeon who was being slandered. It was a truly remarkable atmosphere which i have not seen repeated since luckily. One of the guys chased away was a Jehova Witness who had probably never used the Internet before and never will again. Would make a cute skit.

Anyway, Ziggy. Saw your post while logged off. I'm not sure what forum you're reading, what you post isn't at all an accurate description of my thoughts or any others I have read here.
Posted 2/15/2013 4:38 PM (GMT 0)

davidg said...
Oh I see, Ziggy. Couldn't see his post while logged in.

That's ironic actually. When i first posted here Ziggy greeted me by telling me I was a fraud, a pawn of my surgeon and not an actual patient. Believe it or not he and a few others also chased away three legit brothers (whom i know) because they were also accused of being frauds. All people posting about their success with surgery and defending a world class surgeon who was being slandered. It was a truly remarkable atmosphere which i have not seen repeated since luckily. One of the guys chased away was a Jehova Witness who had probably never used the Internet before and never will again. Would make a cute skit.

Anyway, Ziggy. Saw your post while logged off. I'm not sure what forum you're reading, what you post isn't at all an accurate description of my thoughts or any others I have read here.

Since you're going down memory lane there dave lets tell the truth. For awhile we had new posters logging on here declaring what a great surgeon your doctor was and then never being heard from again. Many of us it was more than a few saw this more and more as a possible spamming campaign that HW should not be subject to and forbids.. I remember looking at your doctors web site which had endorsements and high pressure add writing any used car site would be proud of which further added to our suspicions. That said you came and did defend your doctor and since, few "spam" type Samadi patients have appeared. Most of us respect our doctors dave but you border on hero worship with yours. I don't remember the Jehova witness, I'm sorrry to say.

Then again I'm so bad you keep me on ignore which is fine with me, but let me tell you at this opportunity I was the one who won your fantasy football league..
Posted 2/15/2013 5:15 PM (GMT 0)
I don't worship anything or anyone, it's not in my DNA. I'm eternally grateful to a surgeon who is a really caring person and who happens to be world class. He told me he could deliver me the results I hoped for and did, I say this understanding that my PSA may rise again in the future. I've interacted with numerous of his patients and we all feel the same. One of the top hospitals on the planet feels the same, the most viewed news network, that hired him thinks so. I think it's safe to assume the guy is a phenom at this.

You're 100% wrong about what you consider an orchestrated PR effort here. He wouldn't waste his precious time and here I still am, 2 years later.

What happened that month was really unfortunate and goes against everything this forum stands for. Anyway, water under the bridge.

As for the FF, that league didn't take off because our group focused on another one. You won it, but I beat you pretty badly if I recall.

AS is a personal choice and I've never seen anyone attack or criticize a brother who has shared his intention to follow that path. You can't say the same about people who share the same about surgery.
Posted 2/15/2013 5:35 PM (GMT 0)
I regret and apologize, my HW friends, that I allowed myself to be dragged down into the slimey underbelly of the internet where the trolls and bottomfeeders exist merely to perpetuate & provoke more “posts about other posts,” rather than adding value.   I re-commit to maintain focus on support and information beneficial to HW/PC.   I shan’t be dragged or provoked into goofiness again. At this point, this thread should simply “ let sleeping dogs lie .”
Posted 2/15/2013 5:55 PM (GMT 0)
David:

As Ziggy said, when someone comes on and the first post praises a doctor and/or tx., we are very suspicious. Some doctors do market that way. You came at a time when this was rampant and, frankly, I originally thought you were just one more Samadi shill.

I still think we have to be careful praising our doctors as Gods. Any good doctor who sees a lot of patients will have successes and failures. The best ones by definition would have a much higher success rate (for comparable patients).

Anyway, that was then, this is now, as you said. There is no point re-hashing that stuff.

Sometimes it is not the information, but the marketing of it that can mislead.

I've totally enjoyed your posts. They are thoughtful, intelligent, and well-written.

AS is certainly a valid way to go under certain very limited circumstances. It also requires a certain type of mental make-up. Many (if not most) of us would find that hard to do. Casey is making it sound like such a clear cut decision, but it is anything but that. Look at all the responses here. I didn't see anything remotely resembling hysteria. Frankly, the fact that so many biopsies turn out to be upgraded on surgery FOR ME would mitigate against AS. I believe that concern is a VALID one. Even using different colors in a post does not mitigate that validity. But, each to his own. I believe.

Casey, you have been told many times that you are being abrasive. Coming across as a know-it-all does not help at all. I mentioned some advice I got that has been helpful throughout my life and career: "Caress an idea; do not strangle it." You might want to consider. You contribute a lot, but you can also LEARN from others.

Regarding the internet in general, HW, and taking advice here, I have found HW to be wonderful. I have been able to express thoughts, feelings, and frustrations that I express nowhere else. You understand the PC plight. I'm sure there might be a case of someone logging on here for the first time and deciding that HW is too contentious or even worse taking some advice as if it came from a medico. But surely anybody who stays on here for more than say 12 hours would get a good feel for what goes on here and be able to sift through the information.

Ideally, nobody would be instantly driven away. But we are a community with all the fallacies of the human condition. We can't be all things to everybody, but we can try our best.

Mel

 

Posted 2/15/2013 5:58 PM (GMT 0)
I just read Casey's post after I uploaded my own.

First of all, when I clicked on his last few words ("let sleeping dogs lie"), it linked to the University of Sydney. On that page, there is mention of a book on PC.

What's up with that? Is Casey recommending the book, or what?

Mel (posting from the deep HW underbelly!)

Posted 2/15/2013 6:15 PM (GMT 0)
“Never wrestle with a pig—you get dirty and the pig likes it”

ed cool

Posted 2/15/2013 6:25 PM (GMT 0)
Casey, you're not the first to be baited into responding to what I see as incessant trolling by one particular member. However you should relish in the fact that you have contributed far more to the HW knowledge base that someone who spends his time hiding behind a keyboard trying to provoke fellow members. Perhaps he will mellow when he grows up.

In general, and speaking to the criticism of Casey's approach, I think Casey is blunt but pretty much right on with his commentary. He does not pretend to be a doctor and, unlike a lot of other posters, Casey generally backs up his comments with facts....which I find refreshing. Yeah, I get occasionally put off by the diet thing...but, honestly, that's probably because I'm not good good enough at eating the foods I should be eating. Like David (Purg), I have a thing for chocolate. I'm just hoping that Casey discovers a study that lets me know that chocolate helps prevent BCR!

Questions, I think you give far too little credit to the intelligence of new patients who arrive at HW. Yeah, they are looking for support. But I also think they are looking for INFORMATION. HW is a vibrant place; we are blessed with members who have significant knowledge about PCa and are willing to share that knowledge - sometimes passionately. I think that's a good thing that should be encouraged; like Mel, I think HW is a wonderful place.

Jim
Posted 2/15/2013 6:33 PM (GMT 0)
Tupduck, hate to point out the obvious to you, but you're also behind a keyboard.

You don't know the definition of a troll and your wolf pack activities, albeit as a follower, are closer to definitions of trolling than anything you have offered.

AS is not the issue of this pointless sidebar, it's Casey harsh and in my opinion not intentioned habit of being extremely judgmental and pedantic with new posters. Calling people "hysterical" is not kosher in a support group environment. It's as simple as that and numerous people have pointed this out over and over again.

Just remember that this is a peer to peer support group in nature.
Posted 2/15/2013 7:29 PM (GMT 0)
Questions;
Excellent advice to newcomers:
Trust your doctors and don't question them.
Take all of the advice, experience and information given on this forum and ignore it. Don't bother to check on the information given because your doctor has it all. He is up to date on all the latest treatments and staging technologies, and will not be at all biased by his area of expertise.
The only information we should provide to new comers is support in order to make them feel comfortable with this disease. Any information about alternatives should never be told to newcomers.
Why bother to get a 2nd opinion or seek additional information as it will only give you confused information and cause anxiety.
And most of all, ignore all the latest information; because if your doctor doesn't have it it doesn't exist.
Never give information about the latest studies and only include those that confirm your doctor's recommendations.
These are the proven keys to a successful outcome.
And lastly by all means always get treated because we know that 3% of us will die from this dreaded disease, and that is absolutely worth your sexual life and being incontinent. In fact we should all have our prostates removed at age 30 because we know that by the time we are 60 that the majority of us will have PC and the earlier we treat it the better off we will all be.
JohnT
Posted 2/15/2013 7:41 PM (GMT 0)
John -

peer to peer advice here is extremely valuable. It's information people can go back to their docs with.

Nobody has ever said to not question doctors. It's not fair to suggest anyone has.

It is fair to say, however, that it isn't healthy to plant seeds of doubt, specially when cloaked in a clear bias, and to further embellish these with innuendo, generalizations and unproven information.

It's also fair to say, I think, that a very small minority of people here have an unhealthy view of medical professionals and their motives. Some see them as greedy money/ego driven people. I see them as wonderful people who do a lot to help us.

That said, I have read posts by people like Ralph in Arizona and Tony and asked the questions they raise to my doctor because I expect more treatment one day.

Your last two sentences are pretty much bombastic more than sarcastic and as you know, untrue. Nobody is getting their prostate out at 30. 40 year old victims like me are not the norm, and that the average age for PCa surgery is probably around 55-60 if I had to guess. It's also not true that we lose sexual or urinary function with treatment. You did,'t, I didn't, many more here didn't, some have to some degree and some unfortunate ones have. There are a lot of contributing factors to those statistics and realities including age, skill of practitioner, health heading into treatment, extent of disease and luck. But let's not exaggerate,
Posted 2/15/2013 8:46 PM (GMT 0)

davidg said...
I don't worship anything or anyone, it's not in my DNA. I'm eternally grateful to a surgeon who is a really caring person and who happens to be world class. He told me he could deliver me the results I hoped for and did, I say this understanding that my PSA may rise again in the future. I've interacted with numerous of his patients and we all feel the same. One of the top hospitals on the planet feels the same, the most viewed news network, that hired him thinks so. I think it's safe to assume the guy is a phenom at this.

You're 100% wrong about what you consider an orchestrated PR effort here. He wouldn't waste his precious time and here I still am, 2 years later.

What happened that month was really unfortunate and goes against everything this forum stands for. Anyway, water under the bridge.

As for the FF, that league didn't take off because our group focused on another one. You won it, but I beat you pretty badly if I recall.

AS is a personal choice and I've never seen anyone attack or criticize a brother who has shared his intention to follow that path. You can't say the same about people who share the same about surgery.

Once again you try to rewrite history dave. I had to look it up.

You beat me 49-100 and I later won our second meeting 93-88. Then I bounced your ass out of the
of the playoffs 206-138.

As far as not attacking anyone here who chose AS or other than radical surgery it was common practice a few years ago. I should know people thought my choosing TFT was a death wish, I called it a no brainer. Now nearing my 5th anniversary who was right?

Go back to trolling now dave, but at least get your history right. Be it your football league which btw was a low priority to me too. I just did after my work league I've played in for the last 14 years. Or your arrival here defending super doc.
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