Respect Issue--from another list

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 8/30/2010 6:26 PM (GMT -6)   
I subscribe to a Listserv (ACOR Prostate Cancer). We get messages in a Digest Form in our email (well, that's what I elected). Anyway, the respect issue has come up there, too. I got permission from the moderator to re-post his message here. I thought it was very well-written:
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
 
I don't want to get into an extended discussion of moderation policy here, but when people starting becoming disrespectful and abusive, their is always the risk that discussion will take an excessively chaotic turn. When this happens, we tend to get increased notices from the LSoft server notifying us that people have unsubscribed. When people unsubscribe they automatically receive a questionnaire email asking for their input about how our list may have fallen short, they will sometimes say that it is because of the incivility, the insistence on maintaining rigid opinions about matters for which their cannot be any certainty, etc..

It is true that discussion lists tend to survive despite uncivil behavior, and this has proven for some time to be the case with the prostate cancer newsgroup, but there may be hidden costs - even if people don't leave the group, they may not take time to wade through volumes of thoughtless verbiage, may read less of the messages, and participate less in discussions. Physicians may be less inclined to waste their valuable time by becoming involved.

Yes, cancer is serious, and both patients and physicians on all sides of controversial issues may feel that to the depths of their souls. Emotions may rise to the surface and we may become angry or abusive toward people with whom we disagree, whether rightly or wrongly.

It is unfortunate that sometimes out of feeling a need for certainties we may attach ourselves to singe-minded views, place hope in expensive remedies of questionable value, or dismiss consideration of promising treatments for what we believe to be insufficient evidence, and listen with half an ear when others present more nuanced, subtle views about matters.

When there are so few certainties, guessing around may the best we can do,  after making as much effort as we are capable of to examine issues in detail. Without a medical education background, this is less easy. I feel that we need to maintain a healthy skepticism about all points of view, including our own. Uncertainty is tough to live with, but that's the way life is. Aurgh.

Charles Clausen
a PPM facilitator
======================================
 
Mel

gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 8/30/2010 8:44 PM (GMT -6)   

Thank you it is very interestig post.when I posted "Respect"it was not because I felt that the post

was disrespeting any individual,it was becouse it has the potential to become one.

onece  againg  I trully fell thet we are here to help and support each other and we should respect

the opion and thought of every one regaless how we fell about it. yeah


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/31/2010 10:50 AM (GMT -6)   
These announcements are present at every prostate cancer board. It is the nature of the topic, at least in my view. The reason for the post was not unfamiliar to me. Nor was the source. Charles is a terrific Moderator just trying to keep the peace.

Thanks for the post.

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/2/2010 11:16 AM (GMT -6)   
Hey I think I can name, names and not be in voliation as James C. pointed out in another discussion very similar to this one, and that other one has nothing to do with me. But this one started by whomever(no name mentioned) is not really valuable herein. Hey what happens in Vegas should stay in Vegas. I will tell this publically and admit my error of less respect, in another group. You have not walked in these shoes either.

James I quote your words in other thread herein about being Kosher to post something from another forum (from H.W.)-

"Of course it's not kosher, but you knew that before you posted.... I am saddened that one of 'ours' would do such a thing to any extent that the group or person is recognizable to others who may come across that group. I think one of the reasons the Forum attracts so many people is they get an sense of closeness and mutual respect for each other and really don't think that their shared experiences will be taken elsewhere to be evaluated and analysized. I would hope our better nature would be to keep any disagreements with any of us here, and not go gossiping or hinting to other support groups. I also hope that the other groups members will realize what is happening and that they are at danger to having the same done to them at a later date, if some of them choose to 'dish' with this person... '
-------------------------------------(now zufus)----------------------
I suppose this truthfulness holds true throughout this forum? I assume it does. Now as to was I out of line, sure went off the deep end? Why? A particular doc on this other forum tried to answer some of my rough questions on drugs used in hormone therapies, he is only a urologists (might be a genius, who knows), he is not an oncologists and his answers literally mock the works of the oncology world (goes against their findings often) and was a direct blow to us failed PCa patients looking at everything for answers. I overly replied in doseage in response, I also apologized to the doctor directly with email, and basically on the forum. Some other patients had similar thoughts or replies with less tone in them, patients were not happy with being minimalized for choosing protocols other than what this one particular doctor was endorsing. Another well known PCa patient has agreement with my findings about this doctors objectivity and other members whom posted that day or two. Anyway yeah it went to far on that forum....why it is brought up here????  (posted quickly after it was posted on the site where this occurred).Do a few people wish I leave here pronto?  (I had not been dropped from that forum either-fyi)
If so let's make it a poll and let's decide, might as well have some fun with it.
I have no problems with the people whom started this discussion or replied, maybe I deserved such, you are released by me and no harm, love boat returns (lol).  I happen to like everybody here even when we disagree.

Post Edited (zufus) : 9/2/2010 2:04:05 PM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 9/2/2010 11:36 AM (GMT -6)   
Z:
So, where is the poll?
 
Anyway, I would certainly like you to stay. You are very knowledgeable. This does not mean you are always right and doctors are always wrong.
 
I appreciate your contributions.
 
My only hesitation is your tendency to suggest that doctors are wrong/stupid/whatever and that somehow "thinking outside of the box" is always good. Frankly, I think we should think inside of the box BEFORE we think outside. Although I agree with your point of questioning everything, this does not mean that everything is wrong. Remember, sometimes thinking outside of the box leads one to alternative therapies. They are alternative because they have not passed muster under serious studies. Maybe some have, I'm not sure.
 
The big problem is that this disease is so unpredictable. One person responds to treatment X and the other has nothing but problems. There seems to be little predictability here.
 
Regardless of my comments above, I still maintain that you have forgotten more than I know in the area of treatment beyond the SRT stage. You are a valuable resource.
 
Some of you are referring to something that went on at another site. I think I know what you are referring to, but I'm not sure. I thought any issues there were resolved. Care to enlighten us as to what happened (or maybe it's best to leave it go?)
 
Mel
 
Mel

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/2/2010 1:05 PM (GMT -6)   
Bob, no one wants you to leave here. We would do the opposite and encourage you to be who you are. I think Compiler was using Charles general post to point out that we are not supporting each other as well as we can here, and thought it to be well worded and general enough to post.

I agree with him that's why the post stood, but perhaps that's not my best judgement. If you would like it to come down, then I understand that and will indeed take it down. I am not going to discuss on this board what happened that caused a commotion there. What I mentioned above is that what Charles wrote about happens here, too, and a discussion topic there is what we see can cause the same discourse here.

The fact is that one incident is best dealt with on the PPML.

Tony

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 9/2/2010 1:39 PM (GMT -6)   
Tony:
 
Please believe me: I copied that post (with Charles' blessing) ONLY because we had a thread going about RESPECT.
 
My point was that this is going on elsewhere, too. I just thought the comment was VERY well-written. Sometimes we need these reminders, including myself.
 
There was no intent to cast dispersions on anyone in this group.
 
Mel

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 9/2/2010 1:56 PM (GMT -6)   
I think I'm as confused about this thread as I was about the other thread about something happening at another site.  In any case, count my vote for "Zufus Stays".  Bob, you speak with passion and conviction; I thoroughly respect that.  Whether I agree or disagree with your commentary or approach is immaterial for this post...my point is that I appreciate your valuable contributions to the discourse.
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/2/2010 4:07 PM (GMT -6)   
Let it be noted, that zufus has nothing to do with the incident on the other thread. I dont know anything about anything negative about zufus. he's an ally and an asset here at HW. I think people are getting the two threads mixed up. there's no reason for zufus to leave, or even think he needs to leave, he's not the problem.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 9/2/2010 5:13 PM (GMT -6)   
hello - the other topic posting ( which has run its course) has NOTHING to do with Zufus.

I have found Zufus' comments and queries to be strong, thought provoking and very helpful understanding this disease we call PCa.

At time we have to think within-the-box to keep sane while coping with prostate cancer .. and at times , it is very good to think outside-the-box.

hugs to one and all

BRONSON

Post Edited (tatt2man) : 9/2/2010 4:16:33 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/2/2010 5:19 PM (GMT -6)   
bronson, you are dead on in your remark. It takes both the "box" and "outside" the box, to learn all you can to keep the Prostate Demons at bay. If any of us end up in the ranks of Advanced PC, I can't think of a more researched person than zufus to speak to on the subject. I view his knowledge as a tool for a future that I hope and pray will never have to use.

bronson, you are a peacemaker, that goes a long way with my personal philosophies in life. As the hymn writer said, "Let there be peace on Earth, and let it begin with me...."

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 9/2/2010 6:03 PM (GMT -6)   
Agreed (David and Tatt).
 
Mel

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/2/2010 6:09 PM (GMT -6)   
Me too!
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 
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