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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/27/2008 7:16 PM (GMT -6)   
ALL,
Our forum has grown so much it makes new situations appear.  It is good that we grow and add many new members and their friends, spouses, or even daughters.  But we have to be aware that this means we should post here as we would in a conversation with someone like a 15 year old daughter ~ which we have had here.  This post is difficult but necessary.  The Moderators and the Admin are not in favor of some recent posts. Overly graphic and/or sometimes insulting to other members.  I personally consider this almost juvenile at times.  See rule 3 (three ~ spelled out for you) below. 
 
I understand that our disease requires graphic content, but...   
When you need to be graphic, PLEASE consider taking the discussion into Email.  Help us with a suggestion, also.  But think that what you are posting can be viewed by the many children and loved ones we have in our experiences.  This forum belongs to ALL OF US.
 
Any Insults or insinuations will be deleted without further notice.
I find this completely dumb that I have to post this message.  C'mon guys.  This is not a request for political correctness, but common sense. 
 
This Forum is for ALL in the family of a prostate cancer patient!!!
 
Please review and make nice your posts.  Or we will.
If there are posts you have made, good intention or not, that are questionable, clean it up.  Go back and read the rules and ~ Clean it up!  Or we may have to for you.  Don't get mad at the new Moderators.  You can blame me.  I can take it.  Sorry for the pending deletions.  Kind of.
 

3. No posts that attack, insult, "flame", defame, or abuse members or non-members.   Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member.  Decisions about health and well-being are highly personal, individual choices.  "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.

 

This forum was such a great help to me that I also volunteered my time to help moderate.  We have gained many members because of the forum format and we have lost some who don't like the forum rules.  That's OK.  If we can't keep everyone happy, we can keep those who follow the forum rules. 

 

Please take this notice for it's intent to encourage us all to do the right thing. 

 

Tony ~ TC-LasVegas

Prostate Cancer Forum Moderator

Post Edited By Moderator (Admin) : 5/28/2008 4:07:37 PM (GMT-6)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 5/27/2008 7:41 PM (GMT -6)   

Good show Tony!!!

Our forum is no place for venting personal invective on anybody.  The tone here is informative and supportive.  Any thoughts that don't fall in those categories should be kept to ourselves.

If you need any help, just call...

Jim

 

Post Edited (biker90) : 5/27/2008 7:48:19 PM (GMT-6)


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 5/27/2008 8:11 PM (GMT -6)   

Amen Tony!!!!

Dutch


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 5/27/2008 8:48 PM (GMT -6)   
Tony,
 
You have my support 110%
 
I am not aware of what transpired to bring such a post on but I feel I know Tony well enough to know he only has this forum's well being in mind with his post.
 
There will always be differing opinions, especially with different types of treatment and locations.  We all are here because of a common bond that affects us all.  This foum is here to help and console sometimes hurting individuals.  The last thing we need are things that divide us.  We need things that bring us together.
 
My prayers be with you all.
 
Richard & Debbie
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
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 5/27/2008 8:55 PM (GMT -6)   
Thank you so much, Tony.

From:
One of The Women of The Forum
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
PSA - Undetectable since 6/07/07

Link to journey:
http://www.healingwell.com/community/default.aspx?f=35&m=826731


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 5/27/2008 10:23 PM (GMT -6)   
We have your back Tony :-)

I came to this forum for information and stayed because of the supportive, informative environment. Thanks for helping to keep it that way.


In peace,

Chayna
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


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 5/27/2008 10:36 PM (GMT -6)   

Thank you Tony,

From another woman on the forum

 

Diana


Rick & Diana
Age 68/ 67@ Dx
6-30-06  PSA 2.54
1-22-07  PSA 4.98
1-26-07  PSA 5.09
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
3-6-07 Triple Spinal Fusion (due to old back injury)
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
8-1-07   CT Scan & Chest X-Ray   Clean
 9-26-2007 PSA 0.07
11/1/07 PSA 0.1
11/30/07 PSA 0.12
01/31/2008 PSA 0.3
03/01/2008 PSA 0.3
04/28/08 PSA 0.6


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2290
   Posted 5/27/2008 11:05 PM (GMT -6)   
Well said, Tony. Thanks for volunteering to help moderate this forum.
This place needs to be caring, supportive and informative, not a personal battleground.


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 5/28/2008 5:53 AM (GMT -6)   
Moderating any forum can be a daunting task at times, and I think this one has it's own special challenges. Keep up the good work! As said by several above, the presence of family members is part of the 'identity' of this forum to many of us.

Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)
DaVinci Surgery 11/8/07 University of Minnesota
2/22/08 PSA Undetectable


fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 5/28/2008 6:42 AM (GMT -6)   
 I know I haven't posted in awhile, way too much going on, but Good on Ya, Tony.

PSA 4.8

Biopsy Sept 07 half of one needle out of 13 Positive

Second PSA 3.4

DaVinci Mar 4 2008, Dr. Tully, St. Vincent’s Hospital, Birmingham AL, great Hospital and Staff

Path Report Gleason 3+3=6

 T2c, would have been T1c but one lobe 55% involved with benign fatty tumor

  Prostate grew from 28 grams to 32 grams due to Fatty Tumor growing.

2 nodes on lymphatic system did have 2 benign growths

Margins clear

Prostrate confined

2 pads in a 24 hour period

Mr. Happy gets happier everyday, still not firm enough,

 But that gets better everyday

5mg Cialis everyday

Outstanding Wife

Went back to light duty work, 3 days after Catheter removal

Awaiting first PSA, fingers, toes crossed.


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 5/28/2008 7:22 AM (GMT -6)   
Excellent work Tony, we are all in this together, families included, because they are not insulated nor isolated to their loved ones struggles. This is the BEST site I know of for info and support, and in a way, we are all part of a large family. Our purpose here is to inform, educate, and support of each other. My heartfelt appreciation goes out to all of the members here, male and female, alike.

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


JCL
Regular Member


Date Joined Jul 2007
Total Posts : 242
   Posted 5/28/2008 8:32 AM (GMT -6)   
Great post, Tony. And a big thanks for taking care of things here.
Biopsy: Diagnosed March 25, 2007. PSA 3.0. Gleason 6. Five of twelve samples positive with <5% each. No perineural invasion seen.
Surgery: May 21, 2007, Florida Hospital, Orlando,FL
Post-op Pathology: Upgraded to Gleason 7 (3+4), negative margins, negative capsular penetration, negative seminal vesicles, lymph nodes left intact, multifocal perinural invasion, 15% of prosate involving cancer in both lobes. T2c
Continence/Erections Out of pads at five weeks. Fully continent and can achieve erections.
Post Surgery PSA: Four tests, all <0.1
Family history: Great-great grandfather died from PC. My Father had his prostate removed at age 67 in 1997 and has had an undetectable PSA ever since. I was diagnosed at a much earlier age and had a more agressive cancer than my father. Go figure.


Ripandburn
Regular Member


Date Joined Aug 2007
Total Posts : 125
   Posted 5/28/2008 12:09 PM (GMT -6)   
It's awfully hard to not be frank about such a difficult topic. Frankly, as a man who has been physically and emotionally affected by what I think is a horrible cancer for MEN, I tend to agree with what Ziggy has said. This is a prostate cancer forum. Those of us who choose to be here need to understand that this is a topic that can get very intimate and personal. The frank discussion and intimate graphic detail CAN be very important. I hate to see us not have the ability to describe our problems in detail. No matter who is reading it.
52 years old
T1c 3+3=6
DaVinci July 16, 2007
largest cancer .2mm
Bladder Sling installed during prostate removal
nerve sparing with both nerve bundles intact
all cancer contained within prostate nothing near margins
11 weeks post-op - no more pads
3 PSA's all < .1 - Undetectable


Roger G
Regular Member


Date Joined Apr 2008
Total Posts : 150
   Posted 5/28/2008 12:42 PM (GMT -6)   
I have to agree with Ziggy and Rip. At a recent hockey try out some of my male friends had questions about enlarged prostates, prostate cancer, biopsies, etc. One gentlemen abouth 10 years my senior was going in for a biopsy and was scared. When some of the wives came by they all clamed up and asked them to leave. After all the discussions I reminded them that it's important to involve their wives/families.

While I beleive the personal attacks should be stopped, the open and free flowing information is needed no matter how graphic it is. One of privious posts envolved errections while sitting on the throne. Where else am I going to ask this kind of question?? I was very much releived to know it effected other people and will be bringing it up at my next urologist appointment. Sorry you can't get much more graphic than that.

btw.

I am a prostate cancer survivor with both a 12 and a 15 year old daughter. They both remember my father dying of prostate cancer. The younger one especially as he died on the day of her 4 birthday. My mother insists on have a memorial dinner every year on my daughter birthday. I've kept practically nothing (with the exeption of ED) from them, and I think they are the better for it.


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.
 

Post Edited (Roger G) : 5/28/2008 12:50:05 PM (GMT-6)


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 5/28/2008 12:42 PM (GMT -6)   

Tony,

I am in support of your position as are I am sure the vast majority on this site. 

Its bitter sweet to see our numbers growing so fast.

Frank

 

 

 


Diagnosed 01-08-08 @ 53 years old 
DRE normal - High PSA for 5 or more years
2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
Current PSA 6 - Bone and Ct scans negative
clinicalg Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008
University of Chicago,5 hour surgery , 3 hour recovery
Unexpected Cardiac issues appear and disappear?
Hospital stay 30 hours - Catheter out in 7 days  normaly expected leakage - Erectile funtion back on line 9 days 
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate, Seminal vessels clear, fat tissue clear,Tumor on top of prostate distal from apex. 1 positve margin at urethra and bladder.
Six week PSA < 0.05 Ya Ba Da Ba Dooooooooooo.  Put a steak on the grill Wilma!!!!
Oncologist to discuss case with Urologist and Radiation Oncologist to consider radiation.
 


Valentine08
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 5/28/2008 1:14 PM (GMT -6)   
Yipes!  I must have missed the uproar.  As a spouse I've been so impressed with the guys who post here.  This forum is a godsend, mostly because men will speak up and share enormously difficult and personal information.  I applaud all those who have volunteered to share their sensitive experiences and problems with us all.  However, inherent in this disease are critical topics that are probably not comfortable for guys to share with almost anyone besides their spouse, let alone teenage girls.  We need honest information and frank discussions of the nitty-gritty that is part of the recovery.  Thanks for all the courageous contributions guys.  Val's spouse 
Age 59
PSA ; PSA 9/07=3.4; '06=3.2 DRE Negative; '05=2.4; '04=1.7
Biopsy 11/07 =  Stage T1c, 12 cores, 2 positive
Gleason score= 3+3=6
DaVinci Robotic RP surgery: 2/14/08
Path report: Gleason= 3+4=7; Stage T2c


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/28/2008 1:27 PM (GMT -6)   

I agree with Val's spouse, Rip, Roger and ziggy.  A forum about a serious disease is of limited value if frank discussions....NOT talking about bad language here, just candor....are not allowed.  Women who come here should, in my humble opinion, do so with the understanding that they are venturing into a predominantly male territory, just as men would be doing if they join a discussion with ladies about breast or uterine cancer and their related treatments and side effects.

With that said, healingwell.com is an enterprise with an owner.  As owner, that individual can instruct his/her volunteer mods to run this as the owner desires.  I have no problem with that concept.


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


Johnny Canuck
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 5/28/2008 2:10 PM (GMT -6)   
Ok, here's my two bits (Cdn). One of the things that makes this forum so valuable is that we can speak frankly of our medical issues. I think it's a bit of a stretch to expect us to frame it as though we'd be having this discussion with a 15 year old girl. Facts is facts, and I have a tough time talking to my wife about bloody semen...so why don't we rethink that concept.
 
I know that we are sharing with wives/daughters here, and I'm gratified so many try to help out the important males in their lives by joining us. They help us all. I also know they aren't here for 'lulz'...but they'd better be prepared to have their eyes opened.
 
Civility by all means...no flames or personal attacks to be tolerated...good sense and good manners prevail...of course. But I'm going to focus my remarks to an audience that is fully aware of this illness, and while I promise not to be crude, I can't promise not to be explicit if need be.
 
And I don't think any of this is either radical, or belies the spirit of the forum. Thanks to the mods...and Ziggy, you should hang around.
Age: 54
Gleason Score: 3+3=6
PSA: 3.33
Biopsy:7/8 Positive
Stage: "Bulky" T1c
Prostate Size: 27cc
 
Diagnosed: December 05, 2007
Brachytherapy: February 26, 2008
68 seeds, (Iodine 125). 
 
Walk my path at:
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/28/2008 2:19 PM (GMT -6)   
We are afforded the ability to talk in detail about this experience. Detailing blood in seman are not what we are refering to, along with other things we hate to discuss, but we have to. But it needs to be tactfully discussed. We are asking, for example, that jokes about being in front of nurses that are not, uh, specific about treatment for prostate cancer be limited to offline discussion. I think you all know what I mean.

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 (1/08): <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


Ken S
Regular Member


Date Joined Nov 2006
Total Posts : 120
   Posted 5/28/2008 2:20 PM (GMT -6)   
I vote for frank and open discussions. I noticed how "Disney-esque" this site was becoming when a few weeks ago I wanted to emphasize my feeling about this disease and used the word d-a-m-n and it was changed to darn. Golly-gee, gosh-darn it I've got to start talking like they did in the early age of television.

That being said the moderators (past and present) on this site are doing a fantastic job and I'm sure there are some rules here that they disagree with. So if "thems the rules" I will abide.

Ken
Age 54 (2006)
PSA: 2005 - 3.2, 2006 - 3.7
Biopsy 8/06, Gleason 6 (3+3), T1c
Radical Retropubic Prostatectomy 11/3/06
Memorial Hospital, Pawtucket, RI
Post-Op Biopsy, still Gleason 6 (3+3),
T2c, right apical margin positive
CT Scan 1/07, tumor discovered on right
kidney (unrelated to PCa)
Partial Nephrectomy 3/9/07
R.I. Hospital, Providence, RI
IMRT (37 Treatments) 4/23/07 - 6/14/07
PSA: 11/07 - less then 0.01
4/08 - 0.04


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/28/2008 3:51 PM (GMT -6)   

Tony,

Unless I am missing something here, you have mentioned two distinct no-no's in this thread....the be nice to people topic and the do not be graphic topic.

In your most recent post, though, you seem (??) to be backing off the graphic one some, which confuses me.  Bear with me, but when you and I chatted privately, you mentioned my post to Piano and JamesC (and anyone else with a need to know) about the injection technique as something too graphic.  If it is then so be it, but if something like that is too graphic, then 90% of the discussions here about treatments and side effects would fall into the "too graphic" category. 

For the record, that post does not mention any individuals or genders in any way, shape or form, aside from the fact that it mentions in general, common words one way to position things for an injection (and obviously that thing is attached to a male).

Seriously, the too graphic topic is the part I find most confusing, regardless of my personal view of anything else in the original thread.  I am happy to abide by any rules here or anywhere else, whether I like them or not, but it would help to understand them more clearly, especially this "too graphic" thing.


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


Admin
Forum Administrator


Date Joined Jan 2003
Total Posts : 9747
   Posted 5/28/2008 3:59 PM (GMT -6)   
If you don't mind, I will add my two cents here:

The nature of the forum requires some graphic discussion.... after all prostate cancer can and does affect ones sex life, among other things. I think as long as the discussion is clinical and not sexually explicit in nature that a certain level of graphic discussion is allowed in contrast to say the Depression forum. The AIDS forum is also similar, in that it does require a certain amount of frank discussion, but can stray sometimes into more sexually explicit discussion, which is not appropriate.

I don't know if that clarifies anything, but that is my view. Hope it helps.

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

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