Why has the Attention Members been locked?

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anglophile
Regular Member


Date Joined Apr 2008
Total Posts : 82
   Posted 5/28/2008 7:02 PM (GMT -6)   
I don't want to stir up a hornets nest and I'm sorry to start a new thread, but I really hate to see threads locked with no explanation.

Why was the attention forum members thread (I think that's the name) locked, when members were expressing their views about the subject at hand? And why wasn't an explanation posted about why it was locked, for those of us who just logged on and read it and now have no clue what's going on?

Regarding not being too graphic in discussing PC and ED, it's a little hard. The moderator mentioned a 15 year old reading the posts. I wouldn't let my 16 year old listen in on consulations with my doctor. Why can't this forum be password protected? As several have stated in the locked thread, the forum loses some of its usefulness if we can't be frank with one another.

I mean no disrespect to the moderators. Having started and run a community forum with more than 9,000 members I know how hard it is to please everyone (you can't). But there has to be a better solution than posting about such and serious and personal issue and making it clean enough to something a 15 year old would read.
Age 59 - diagnosed in Jan. 08 after biopsy
da Vinci Robotic Prostatectomy 4/11/08 - both nerves spared
Catheter removed 4/25/08
Prostate Pathology:
Gleason Grade 6 (3+3)
Apex: neg
Base: positive (tumor present at right and left base)
Peripheral Margins: neg
No extra postatic extension seen
Tumor corresponds to a AJCC/pTMN stage II
High-grade HGPIN present
Continence: 1 pad night, 2 during day


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 5/28/2008 8:10 PM (GMT -6)   
I do agree that by the very nature of the forum some questions posed and answers given must by their very nature be graphic. If I pose a question on E.D. and say, the use of a vaccuum pump, then I would hope that the answer I receive would be very clear and descriptive and thus helpful. I would not want to have to interpret a fellow member's answer while they dance around not being too explicit and earning someone's ire because it was felt they were too explicit. On the other hand having the forum password protected may discourage visitors and the newly diagnosed from seeking information here (it sort of smacks of a private club). Perhaps the best solution would be to have an additional section dealing with sexual matters within the PCa forum to which access is enabled following a request for such access to the moderators. But this may also make the forum less user friendly.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable


anglophile
Regular Member


Date Joined Apr 2008
Total Posts : 82
   Posted 5/28/2008 9:21 PM (GMT -6)   
Huh? What better place for discussion than a discussion board?
Age 59 - diagnosed in Jan. 08 after biopsy
da Vinci Robotic Prostatectomy 4/11/08 - both nerves spared
Catheter removed 4/25/08
Prostate Pathology:
Gleason Grade 6 (3+3)
Apex: neg
Base: positive (tumor present at right and left base)
Peripheral Margins: neg
No extra postatic extension seen
Tumor corresponds to a AJCC/pTMN stage II
High-grade HGPIN present
Continence: 1 pad night, 2 during day


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/29/2008 5:39 AM (GMT -6)   

Peter (Admin) has been quite specific -- no sexually explicit discussion out here where minors can see it. As he is the owner of this board, we should and must respect his wishes. The locked thread also makes it clear that he wants no further discussion about the minors issue.

As one of the guilty parties, if not the guilty party, I would favor a separate closed-to-minors forum for the ED part of the PCa forum -- if that can be done. If you want a moderator, I volunteer.

Let's have cool heads here -- I don't want people rushing off and leaving the forum. We have a problem here -- let's see what we can do to solve it.


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 


Roger G
Regular Member


Date Joined Apr 2008
Total Posts : 150
   Posted 5/29/2008 7:01 AM (GMT -6)   
Use offline contacts.... but forum rule 15 states.
15. Do not post offline personal contact information (ie. your home address, phone numbers etc.) and do not ask for personal information from others.  Modify your member profile in the Control Panel (VIEW IMAGE) at the top left corner of the forum to set privacy settings for your account.  Use of full names (your first and last name) is allowed but strongly discouraged.  This is to protect your security and identity.
Unless I know the person already, how am I suppose to contact them?
 
I may also be done with the forum.  I've enjoyed the support and discussions, but take acception to some of the rules.  I'll use the WebMD or YanaNow forum if I have questions.

Take care.

Roger
Age: 43 (2008)
DRE Small Ridge on prostate, PSA 1.5
07/2007: Diagnosed cancer, T2c, Gleason 3+4=7
09/2007: Laparoscopic prostectomy @ Hamilton General, 4 hrs.
              Both nerve bundles spared
              Pathology Report: Tumor confined w/in prostate
              T2c, Gleason is 3+3=6
              Went home with JP drain
10/2007: Made return trip to hospital.  All urine was comming out JP drain.
10/2007: Catheter removed. Next to no leakage
11/2007: 1st PSA <.003 :)
              ED: Started Viagra, no response yet.
12/2007: Had confidence to go padless!!!!!
12/2007: ED:  Stopped Viagra as it's causing hemroid problems.
01/2008: 2nd PSA <.003 :)
              ED: next to no response.
04/2008: 3nd PSA <.003 :)
              ED: next to no response.  Changed the Viagra prescription.
 


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/29/2008 7:53 AM (GMT -6)   

Piano,

You have posted nothing here that is sexually explicit.  If you have, I have not seen it.  Then again, that is my interpretation, which may or may not match the interpretation or intent of the owner or moderators.


Danman Bob, Born 1951
Nerve-sparing, open prostate surgery November 13, 2007
Gleason score 9, PSA 14; Biopsy result - 9 of 12 sticks showed cancer
Post-op pathology stated that cancer was confined to the prostate
Unrelated surgery January 2008 delayed incontinence recovery, which is now showing good signs of improvement (fraction of a pad a day as of late April 2008)
100 MG Viagra 3 times a week beginning December 2007
Osbon Erec-Aid Esteem manual pump for therapy beginning mid-February 2008
30 MG papaverine/1 MG phentolamine bimix injections beginning late April 2008
Five week post-op PSA 0.2, five month post-op PSA 0.1, next test August 2008


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 5/29/2008 9:01 AM (GMT -6)   
As I understand the situation, we can still post with concerns for ED, injections, etc. as long as our posts are tactfully worded and tasteful. At least I hope so, I can't imagine why a discussion among victims/survivors of this disease wouldn't be allowed to discuss issues openly here. I have learned much here. Most posts with regard to these issues are medically appropriate and well worded. If all posts such as these are to be deleted, there are +/- 104 pages to critique for inappropriateness.
Randy
46 you when diagnosed, now 47
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Cialis 5 mg every night.
Success with BiMix


Admin
Forum Administrator


Date Joined Jan 2003
Total Posts : 9769
   Posted 5/29/2008 10:08 AM (GMT -6)   
anglophile, I locked the thread, sorry I should have posted an explanation. I didn't see the discussion going anywhere further. Please see my comments at the end of that thread. I am not saying that forum members cannot post discussions that are medically relevant, only to avoid sexually explicit posts. Obviously posts in PC are going to be more frank and open than say the Lyme Disease forum. Does that make sense?  In essence I agree with Lungman.

Peter


Peter Waite, Founder/Editor
HealingWell.com - Community, Information, Resources
www.healingwell.com

Post Edited (Admin) : 5/29/2008 2:25:21 PM (GMT-6)


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 5/29/2008 10:16 AM (GMT -6)   

I have  been on various forums for well over 15 years and I have seen this exact same situtation arise elsewhere. 

IMHO, we must remember that moderators are only us guys/ladies also and they freely give of their time here to make an effort to make the forum run smoothly.

There are many varying levels of thought. There will be those who find the content exceeds their desire no matter had strict the rules.  On the other end you will find those who believe anything should go. I have no problem saying good bye and best wishes to people at either end who decide  they do not want to participate.

For those in the middle who gain much from this forum it will be a shame if we allow something so small to detract from what we all seek.  That is information about PCa.   

Let us move on to bigger and better fish to fry.

Blessing to Old and Malice to None

Richard  yeah   tongue yeah

 

PS  IF somone deems this inappropriate please do delete.


Retired USAF Richard & Debbie on The Shores of Toledo Bend Lake Louisiana
Biospy 1/10/08 Gleason 10, Stage T1C  8 of 12 samples positive all Less Than 5% 
U of Florida Proton Therapy Institute
5/2/2008 LUPRON & Casodex
IMRT to start 5/16/2008 for approx 4 weeks with Proton to follow for approx 4 weeks
Turn Stumbling Blocks into Steping Stones and Keep Smiling
Our Journey is on WWW.GLEASON10.COM
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 5/29/2008 7:35 PM (GMT -6)   
smilingoldcoot said...
I have been on various forums for well over 15 years and I have seen this exact same situtation arise elsewhere.
IMHO, we must remember that moderators are only us guys/ladies also and they freely give of their time here to make an effort to make the forum run smoothly.
There are many varying levels of thought. There will be those who find the content exceeds their desire no matter had strict the rules. On the other end you will find those who believe anything should go. I have no problem saying good bye and best wishes to people at either end who decide they do not want to participate.
For those in the middle who gain much from this forum it will be a shame if we allow something so small to detract from what we all seek. That is information about PCa.
Let us move on to bigger and better fish to fry.
Blessing to Old and Malice to None

Richard


Great post.
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 5/29/2008 10:15 PM (GMT -6)   
I would agree with Richard - those at both ends of the spectrum might be better served to move on.  Mr. Waite has made a decision - live with it and if you can't we will continue on without you.
 
Best wishes to all.   Dutch
Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - 2001 - No side effects.  My journey is at: http://www.healingwell.com/community/default.aspx?f=35&m=727565
7yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 5/30/2008 11:52 AM (GMT -6)   
What happened to the prostate cancer HELP forum I used to be a member of? 2 years ago this was a place where people tryed to help each other, no big discussions about what who's post was right or wrong. We really cared about each other then>
This is why you don't see my name much anymore>
still your friend,
Pete
55 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 years depression after surgery prior to Hypogonadizm DX, Testosterone Theropy (Testim Gel)since 12/06. Fighting to stay upbeat daily, I am's what I am's and that's all that I am's! (Popeye)  55 and still alive!!!


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/30/2008 12:46 PM (GMT -6)   
Yep,

Setting too many limitations does not necessarily promote a free thinker. The occasional ruffled feather is not only normal, it may actually be good for the soul. Disagreements are part of the problem solving process.

Saddly, this was not what happeded Pete. We need to trust that the negativity was so acutely disruptive that the only decent thing to do for all concerned was to end it, delete and become seperated from that negativity. I did read some of it and trust me...you will agree. Freedom of speech is pretty broad so you can imagine how severe it had to be for me, Miss open Mouth Insert Foot, to believe we needed to remove the obstruction and let the forum flow again. Now on with the flowwwwwww.... :>)

Swim
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/30/2008 12:58 PM (GMT -6)   
Swim- I just wanted to tell you what a breath of fresh air you are! Your post was very refreshing!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
Praying for a cured dad. First PSA 3 months!


Co-Moderator Prostate Cancer Forum


anglophile
Regular Member


Date Joined Apr 2008
Total Posts : 82
   Posted 5/30/2008 6:16 PM (GMT -6)   
Well, some of you are making it sound like it's an "either/or" situation... like we can't have one frank discussion about the rules here while still having other discussions about PCa and that's simply not the case. I've also seen this discussion called a "distratction." If you don't want to read a particular discussion on a forum my suggestion is that you don't click on it. Distraction eliminated.

I, too, have seen this happen on other forums. I am reminded of something someone told me once when moderating, "They will remember what you did (moderating a post) long after they forget the post."

But since I posted my original query I feel the moderators have been straightforward in answering and I've actually enjoyed reading all the responses -- they show we all have differing opinions about the subject. I get their reasoning for doing it this way but I can respectfully disagree, can I not? I don't know how many 15-year-olds are going to want to read a forum full of mostly old guys talking about about their privates (I put that in 15-year-old terms). But, PC is the word of the day and so I'll abide while posting here. But I'll also look for additional online support where we can be more open and candid about what we're going through. It's disappointing to me, after having just discovered this forum a short time ago.
Age 59 - diagnosed in Jan. 08 after biopsy
da Vinci Robotic Prostatectomy 4/11/08 - both nerves spared
Catheter removed 4/25/08
Prostate Pathology:
Gleason Grade 6 (3+3)
Apex: neg
Base: positive (tumor present at right and left base)
Peripheral Margins: neg
No extra postatic extension seen
Tumor corresponds to a AJCC/pTMN stage II
High-grade HGPIN present
Continence: 1 pad night, 2 during day

Post Edited (anglophile) : 5/30/2008 6:19:22 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/31/2008 12:18 AM (GMT -6)   
Wayne,
Your support you seek is here. When I said what I said in my "Attention" thread, I again didn't word it correctly. I meant the comments or jokes that might follow a graphic detail about treatment. Not the unfortunate need to discuss our graphic "privates". That's too PC for what I really meant to say. And I will be more careful to not let compounding factors compel me to deter this type of discussion. When I used the 15 year old daughter analogy, I meant to say, be careful, one might be around. But if it were my 15 year old, I wouldn't shelter her, but rather explain why these guys have to communicate this way.

Keep looking for what you need here...You have more mature moderators trying to help. We may say something from time to time, but it's well intended. Oh yes, and one other thing. Thank you Wayne...

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 9 '08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
 
STAY POSITIVE!
 
Prostate Cancer Forum Moderator

Post Edited (TC-LasVegas) : 5/31/2008 1:22:34 AM (GMT-6)


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/31/2008 4:53 AM (GMT -6)   
Anglophile, I'm also looking for another forum to supplement the ED side of things. If you find something useful, please do let's know. I'm planning to start a thread on this topic, but not just yet -- must let the dust settle first. :-)

Now that I know what the forum rules actually are -- they really do mean do what they say! -- I'll be a lot more circumspect in this area.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/31/2008 5:17 AM (GMT -6)   
Guys,

If you find one, please let us know too. In case no one ever wondered why a liberal mouth such as mine cuts discussions on intimacy short, the concern is that it takes so little to say too much. We'd rather have the only good support group than any of the others over all. There is no better than this one yet, the need to really discuss the nitty gritty is sometimes present and we need to look other directions for that type of support group. We (I) won't leave this one. Planning on expanding our choices though.

Swim and Paul
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 5/31/2008 8:15 AM (GMT -6)   

Just a thought about the need for another support group dealing with ED issues.  There's an option here that can be used, with our current members of this forum.  The Prostate Cancer Chat Room is always open and available.  If someone wanted to discuss anything, they could ask others to meet in the Chat  room and continue the discussion, or could schedule regular times to meet there.  The advantages are we would still be within the friendly confines of HW Forum, among friends, so to speak.  Most of us recognize the screen names used by the PCa Forum and would be aware when a "stranger" to the PCa pops into the room, so appropriate caution can be taken to make sure we aren't talking to minors or others who might not find the subject appropriate. 

One of the areas I intended as a new Moderator to concentrate in was to try to get the PCa Chat room functioning on a daily basis.  It really is a resource that has been neglected, in my opinion.   Maybe with this suggesgtion we can accelerate that use.    :-)

So what do you guys and gals who want to discuss sensative subjects think of this as an alternative?

 


James C.
Co-Moderator- Prostate Cancer

Age 60
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
5/7/08 ED- Viagra, pump, no response- Trimix .075ml continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 5/31/2008 5:49 PM (GMT -6)   

First of all, I confess, I have never actually used a chat room!  Although I spend a lot of time in on-line forums like this one. So what I write here is from an understanding of what a chat room must be like -- not from any actual experience. These are the issues I would have with it:

1. Time zone differences. Some of us are in wildly different time zones. If my bed-time conflicts with chat-time, bed-time wins. Work-time wins too, unless you have a very understanding boss.

2. Archive and search abilities missing? Would we even want to archive most of the chat?

3. How do we red-flag a minor? Do we even know who they are?

4. I like to consider what I write, pay attention to speeling and gramma and make sure I am as clear as I can be. Don't think I will be able to do that with chat.

5. I like the time slippage of a forum like this one. Any member can come in any time of the day, post something and others can read it whenever they like, at any time of their day -- or week.

But having said all that, I would be happy to give the chat-room a try. I think a major stumbling block will be setting a time that suits most potential participants.


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 

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