is it kosher to discuss actions of one group in another group

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tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 9/1/2010 8:48 AM (GMT -6)   
hello
- stumbled on posting [ IN AN OTHER DISEASE FORUM AT HW ] by a member of this PCa group discussing events/postings in this group and ... especially his thoughts of the actions of another member of this group ( thinly disguised)
- sorta felt like a stab in the back - high school antics of cafeterria talk - with shades of "in my heart" and "my friend" - BULL FEATHERS -
... I don't consider a friend someone who manipulates the facts and continues to bully others in abstentia ...

off my soapbox

BRONSON


- post edited - to help clarification -

Post Edited (tatt2man) : 9/2/2010 9:10:18 AM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/1/2010 9:04 AM (GMT -6)   
Of course it's not kosher, but you knew that before you posted.... blush devil smilewinkgrin 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... mad confused shakehead

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 9/1/2010 10:36 AM (GMT -6)   
Geez. I know this is the Internet but I had expected people to be professional enough to keep what is said here, here.
There is never a good reason to bring other outsiders into the mix. That is a juvenile, coward's way out and the actions of someone with a very short winkie. (Written by someone with a very short winkie.) ;-)

I have not seen the action described. But then again, I never even considered looking.
My 2 pence.
Jeff

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/1/2010 4:58 PM (GMT -6)   
To The Poster Here at HW, that betrayed the trust here at HW and my personal trust, you know what you posted at another site about me. I also know you have deleted it since it was discovered by one of our posters here.

You were so wrong in every sense of the word. How dare you disclose personal information about my case and my family on another website. There's no point denying what you did, and no point naming you. THen I would be accused of "flaming" you here.

If that ever happens again, or at any other support or web site, I will take all and full legal action against you. Not a threat, a promise. Copies of what you posted about me were copied and pasted for safekeeping before you deleted them.

This is the lowest blow I have ever seen in my nearly 2 years at HW. If I were the owner and/or moderators here, I would ban you for life for your betrayal of information and the trust of the site.

You didn't just hurt me, you betrayed the trust of every brother and sister here at HW Prostate Cancer.

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.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/1/2010 5:28 PM (GMT -6)   
It really does not bother me anymore when it's about me. I have a sometimes controversial point of view about prostate cancer ~ a very controversial topic. Because I chose to be visible in many places online, I am certain that I get targeted, I'd prefer they say things to me, but I have seen it elsewhere what I posted here. Like it? No. But It won't be a cause of action from me when it's about me.

I have made reference to material here, but I never use names or specifics. On exception, Todd gave me full permission to talk to groups about his disease. And when I was hoping to get more information he could use, that is precisely what I did.

That stated, If anyone ever comes here and identifies a member by name without their permission, they can and will be dismissed if it is brought to our Admin's attention. It's a touchy subject, but we really should respect someones choice of anonymity.

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

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 9/1/2010 5:52 PM (GMT -6)   
I agree with all the responses on here about the actions of a fellow member in posting a name and their feelings about another member on another thread. Shoot, very rarely do I tell my family about our comments, but when I do it is usually something positive and I never give names. When you have those kind of feelings about another forum member, it is best to discuss that in private with someone you trust and respect.
 
Someone told me once that you can never control what somebody says about you, you can only control who you are. I tend to let most things run off my duck wings, but not all things.
Michael

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 9/1/2010 6:21 PM (GMT -6)   
This is like walking into a movie right after the climatic scene wondering what is going on while the credits roll.

Sorry for whatever happened to you Dave by whoever, wherever, and whenever.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/1/2010 6:23 PM (GMT -6)   
Tony, thank you for your courtesous reply to a touchy subject.

If you or any of the moderators want to have evidence or some support of this event from other HW posters, would be willing to supply you or any of the moderators by e-mail.

I would be equally upset, even if I hadn't been the subject of this betrayal of trust, a decent fellow sufferer of our malady just wouldn't do something like this in my opinion.

I know I post a lot, that's my business and my choice, and I do realize it leaves me wide open for abuses in times past, that part, I can handle, this today, is a new low in my opinion. If the party was hoping it would drive me away from here, that plan isnt going to work for them.

I simply don't know why others aren't content to live and let live, and to agree to disagree, in peace, without contempt or malice. But hey, that's just how I am in "real life".

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.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/1/2010 7:30 PM (GMT -6)   
Jeez Louise...if there's one place where you need to have absolute trust in people it's a forum like this one. Sorry David that you were the target of some unsavory happenings on another forum by a member of our "family"... not a good feeling.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 9/1/2010 9:07 PM (GMT -6)   
David, sorry that someone could hurt a wonderful person like you who cares about us all and has gone through so much pain. People like that should be banned from this forum.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 9/1/2010 9:15 PM (GMT -6)   
This is the intenet. It is truely the wild wild west. we just need to ignore this kind of thing.
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10 .50

April 10 MRI and Bone Scan show lesion on lower spine, false positive.

Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July

psa July 10 <.01 HT at work

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 826
   Posted 9/2/2010 9:33 AM (GMT -6)   
What is the point of this post?
Dx 42
Gleason 6 (tertiary score 0)
OPEN RP 10/08  Johns Hopkins
pT2 Organ confined Gleason 6
PSA Undetectable as of 10/15/09
Next PSA 10/15/2010

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4834
   Posted 9/2/2010 9:39 AM (GMT -6)   
  shakehead

Post Edited (Steve n Dallas) : 9/2/2010 1:18:21 PM (GMT-6)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 9/2/2010 9:41 AM (GMT -6)   
Other than the PC part and someone not playing nice in the sandbox, this is not a private site. There is no telling what others will do with the information we post. All we can do is hope negative remarks don't pop up. Sorry it did. shakehead
 
Swim

Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted 9/2/2010 9:57 AM (GMT -6)   
David
 
You are one of the most supportive folks on here despite all that you are going through yourself.  - this really sucks
 
Ray

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 9/2/2010 10:08 AM (GMT -6)   
Chris - I edited my intial posting - info is in square brackets - to make it clearer - sorry for the confusion.. and to those who wrote me - thank you for your support.
BRONSON
Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: Sept 23, 2010 -TBA

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/2/2010 10:10 AM (GMT -6)   
Swim,
I was dumb enough to think there was at least a certain sense of honor among us, keep our private thoughts, fears, emotions, etc, private to the confines of our own group. It's different if some ask permission of a member here, to use their case info somewhere else for a positive person.

This was not the case.

And sadly, the guilty party was just posting on here as normal minutes ago. Even a simple and sincere apology from the person would go a long way. But I don't think their ego and arrogance would allow that to happen.
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 : 7212
   Posted 9/2/2010 11:47 AM (GMT -6)   

I also feel that I am watching you talk about a movie while the credits are rolling by.

 

Mel


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/2/2010 12:54 PM (GMT -6)   
Mel, I actually think it would be easier, and better for the group, if the offending person was named and called out for what he did, and perhaps censursed for a period of time. But this is a decision that can only be made by the owner of the site based on the input of our moderators. If they want this episode to slide, regardless of whom it hurt, then we have to go by their decision. By disclosing the name and the specifics of the incident without their blessings and actions, just turns it into another nasty piece of gossip getting passed around like an old shoe.

I am still waiting to see the the offending party just mans up and admits the error of his way, and apologizes openly. That would be good enough for me, I am not into revenge. Trust and honor don't seem to mean much in our present day and age. My money says, the party will never come forward on their own.

To me, friends don't "f" friends, and family doesnt "f" family, I feel like with most of us here at HW Prostate Cancer, we are both friends and family.

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.

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 9/2/2010 1:10 PM (GMT -6)   
What the HE#%  happened!! devil

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7212
   Posted 9/2/2010 1:34 PM (GMT -6)   
Cooper:
 
That's what I'm wondering
 
Mel

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 9/2/2010 4:12 PM (GMT -6)   
hello - if you read my initial posting on this topic it should be clear - if not , sorry for the confusion -
 
-basically, a member of prostate cancer forum wrote about one of the members here at another disease forum - asking advice on what to do about the actions of the member here at prostate cancer forum.
 
- he interpreted the other person's life and questioned his actions and suggested that the PCa member was not competent to care for himself - and that his actions were detrimental to his health.
 
-after being questioned on the sincerity of the posting he chose to delete his posting at the other disease forum - so if it was a valid concern, I would have expected him to have kept it up...
 
- I expect this is how he interpreted the world around him prior to having prostate cancer, and I don't expect him to change - he does have information and support to offer - but do not like his "my way or no way" approach....
 
-hopefully , this will be the end of this story ... roll credits ... THE END ....
Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: Sept 23, 2010 -TBA

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/2/2010 4:21 PM (GMT -6)   
thanks bronson, that was an eloquent response to the curious. if the guilty party would just man up, it would make it easier to put the whole thing to bed so to speak. i am over the "being hurt" part of this episode, as i never, ever hold grudges in real life. i believe that you have to be willing to forgive 7 x 70 times, in order to be forgiven yourself.
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.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/2/2010 4:41 PM (GMT -6)   
Guys, I would hope we are going to see this eventually move forward in a positive way.

Like Swim says, we are on a private website, but we can be publicly viewed. Meaning, no one needs a login to see something in the prostate cancer forum and can use what they see somewhere else. That's why we don't use our real names. You can have as much anonymity as you like, or you can post personal information, but it's your choice. It's wrong for someone here or who just visits to use the personal information of another poster in another board, but we really can't do much about it. We can ask for consideration to not do it, we can warn them not to do it, but we cannot prevent it even if they are barred from the site. I am certain the poster regrets this mistake, but there should not be any public floggings. It was voluntarily pulled down and I think only a couple people ever saw it. If it happens in another forum here at HW, please let a Moderator or the Admin know it and allow us to explore the nature of it. We can easily control that stuff.

I have seen on other boards not at HealingWell, from a couple members still here at HealingWell, say things about me in a negative way. The thing is I don't really care. I only have control about how I behave. It's a good attitude to have for me, as it brings me very little aggravation. For me it's like 60michael says: it's gone as fast as water on a ducks wings.

David, please try to forgive anyone in our group for letting you down. Just as I have forgiven those I mentioned above. I am all for second chances. I personally appreciate you and all you have gone through, as well as your contributions here.

May peace be with you all...

Tony

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/2/2010 5:24 PM (GMT -6)   
Tony, I think I have made it clear, that though I was the victim this time around, I am over the hurt part of it. I am a person of deep principle, perhaps from growing up in a military family, then being in the military myself. I believe strongly in loyalty and faithfulness in a person. It was the breach of trust in this even that really sucks, not the actual disclosures themselves. I would have expected more of a supposed educated person.

I do not hold grudges, ever. How you are handling matters, both as a moderator, anid as a long term patron here, as well as being a first class PC advocate for all of us, is fine by me. I am not asking for anything to be done at this point.

Life goes on, and as we all would agree, I think, there is no perfection in this world. I am too aware of my many flaws to think differently.

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.
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