"Open Conversation" on prostate cancer ~ In Miami, Fla. May 9th

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/2/2009 11:32 PM (GMT -7)   
On May 9th, the Prostate Cancer mission will be hosting a town hall type session on prostate cancer.  The event, called "The 2nd open Conversation" will be held in North Miami, and will consist of a panel of well known doctors, advocates, and those affected by prostate cancer.  The event will also be filmed and it will be available via webcast and there will be linked sessions as well. 
 
(Click on the 2009 event)
 
 
 
There will be a member of this board on the panel...hint...lol
 
Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 3/2/2009 11:37:16 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 3/3/2009 6:23 AM (GMT -7)   
And whom might that be Tony,,,,,,,,,,,,anyone we know??
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/3/2009 6:56 AM (GMT -7)   
Maybe ask them overall there opinion in general of patients options and if they believe, maybe alot of these proceedures unnecessary or overtreated in many cases??? Is there a rush to sell many patients surgery or other proceedures, in some or many cases???
 
Might be interesting to hear their perspectives on this.
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/3/2009 8:34 AM (GMT -7)   
Bob,
Every doctor I have talked to candidly has said yes in both questions. I doubt it will be any different at the event. Many patients after hearing they have this cancer fail to listen to everything a doctor says afterwards. It's natural. In addition, many patients take a doctors suggestion as a directive as opposed to suggesting what HE does for this condition. There are some who over extend their treatment options, including those oncologists who suggest ADT3 for Gleason 6, PSA 4, and 1 of 12 core disease. But anyone who does not do their own treatment research cannot blame the evil empire.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 3/3/2009 1:18 PM (GMT -7)   
Ohio,
The tape recorder idea is especially good for those that freeze up with the doctor or get intimidated, after my 81 year old mother had her recent stroke (12/26/2008), since it affected her speech more then anything else, she uses one with all her doctor meetings, as it can be confusing to her about all her different meds and apppointments. Later she can listen over and over until it makes sense, or has my wife (a nurse) transcribe what the dr. said for her.

And yes, the doctors, the test centers, the rad labs, the hospitals, all work for you, not the other way around, good point. If they don't produce or follow through, you can TRUMP their a** and fire them.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/3/2009 4:13 PM (GMT -7)   
Anyway good luck, we can't wait to see the video since we cannot make it there. Got any idea what you might ask???


 

Post Edited (zufus) : 3/3/2009 4:28:57 PM (GMT-7)


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 3/3/2009 4:30 PM (GMT -7)   

IMHO...

Some say there is "overtreatment" for PCa.

In some cases I would agree. If I had, let's say, 3 biopsies and 1 came up as 1 core in 12 at <5%, I would not be looking at surgery. I would wait 6 months and have another biopsy, and take it from there. It is still cancer. However, based on GS, I may choose to wait.

And...I just read something from a U.K. Health site that said ..."pain in the perineum usually represents localized invasive disease...". ie: cancer spread...locally.

I've had extreme, shut-the-day-down pain in that area between the scrotum and anus. Pain in the perineum. Uro and GP says (limited) tests show otherwise.

Anyone had this and what were stats after surgery?

Mike

 


Lower left groin hernia: mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
PSA start of 2008: 5.3..... PSA June of 2008: 7.3
8 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. All cores, 3+3 GS 6.
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/3/2009 4:53 PM (GMT -7)   
Bob,
I am being asked questions. My role is to provide the patients perspective. I am a panelist and will be providing my own insight to questions I am asked. After the show I will be attending a dinner and perhaps then I can become the audience and ask away. But the audience will have selected questions, and we can see what and who will provide the answer. Mike will have a one on one with Dr. Schellhammer. I am very interested in how that goes... From my perspective it is an honor to be in the group. These guys (and gals) are in my opinion far more qualified than I.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 3/3/2009 6:12:32 PM (GMT-7)


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 3/3/2009 7:24 PM (GMT -7)   
Break a leg Tony!!! You'll do great!
Dx'd 2/18/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Current (2-16-09)
PSA: 38.16
Treatment: Lupron
Taxotere + Prednisone + Atrasentan
[12th Treatment on January 26th]
Clinical Trial:
http://www.clinicaltrials.gov/ct2/show/NCT00134056?term=prostate+AND+atrasentan&rank=2
~~~~~~~~~~~~
Personal Blog:
prostatecancerat42.blogspot.com


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 3/25/2009 9:53 PM (GMT -7)   
Well this is shaping up to be quite interesting. The conflicting studies released in the New England Journal of Medicine have caused quite a stir. 4 of the signatures will be there on the panel as will I, a hopeful candidate for being the exception (or confirmant depending on which study you believe). Stay tuned...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/7/2009 10:11 AM (GMT -7)   
Bump...This is this Saturday!

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 5/7/2009 5:38 PM (GMT -7)   
Hi, Tony
At least you get a free meal out of this deal. Don't get a sunburn. I'll be at David's (FLHW's) disc golf tournament and finally get to meet him. I'll catch the webcast and then drive over to Kansas.
Good luck,
Bob
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci Jan. 19th, No lymph node involvement, all margins clear.
 8 week PSa <0.01
 Gleason downgraded to (3+4)7
 Fully continent...ED progressing as expected.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 5/7/2009 7:07 PM (GMT -7)   
Tony, I feel strongly that you will represent of us here at HW. Learn what you can, say what you can get away with, and I look forward to hear what you heard and learned at this meeting. Having just come back from 5 days in Florida, I know you will suffer in grace and style from that part, lol.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/8/2009 8:20 PM (GMT -7)   
Day one was pretty easy. Except the flying across the country part. My accomodations are nice. A very nice room at a Turnberry in Miami. We had a dinner plan that included me sitting at a table of doctors and PhD's talking Twitter...LOL. I actually don't use Twitter but at least one of the doctors does. One of the highlights of the night was an intense discussion between Dr. Gerry Chodak and PCa advocate Mike Scott.

I also met a PhD (Rhonda Fine) who specializes in sexology. She is an advocate in prostate cancer because she believes that a sex therapist should be part of the treatment process. And get this ~ she thinks it should be BEFORE treatment that a patient should see a sex therapist. After the discussion, it was clear to me she is probably right. She thinks it's wrong that we guys settle for the thought that men who undergo prostate cancer therapy should wait or not worry when sex does not come back in short time. Thus her reasoning is to keep trying. And don't be afraid to try new things. Mostly, be vocal about it and don't sweep it under the rug...She has worked with patients treated in many ways. And ED affects most she said whether with surgery patients right away, or RT patients start having issues at year 1 or 2. And there isn't much that can be done with a patient on hormone therapy. She did give me some hope when she talked about guys getting at some restoration of their sex lives a year after ADT. I like that because I may stop all treatments next week. It's been two years without intercourse for me because of my advanced therapies.

Anyway. Day one was definately a learning experience. Now on to Day Two ~ The show. Camera crews have arrived and did the setup today. I was given my list of interview questions. So if I put my foot in my mouth, you'll know I had time to think about it first. The crew is comprised of the broadcast group for Pat Robertsons CBN. The director is a prostate cancer survivor (as is Robertson). Show starts at 9:00.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 5/8/2009 8:49 PM (GMT -7)   
Sounds like its off to a good and interesting start. Can't wait to hear the rest of it. I agree with the sex therapy part, even in advance of treatment, glad somebody is thinking about that, instead of most men resigning themselves to whatever happens to turn out. I am a big advocate for the mental health angle to serious illnesses, i.e. cancer. No one wants to talk about depression, sucicidal thoughts, etc, low self esteem, defeat in connection to medical treatments. Good luck tomorrow.

David in SC, not in Miami!
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 6 month on 5/9
 
 

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