www.franktalk.org - Trying to Help my Fellow Man

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 7/30/2009 8:17 AM (GMT -6)   
Guys,
about a year ago when my ED was at its worst, I was really looking for info, help and a support group online. I was so frustrated that I couldn't find the ED version of HW. At the time, there was a bit of a scuffle online when it was discovered that a 15 year old daughter of a PCa patient was looking for help and some of the topics were quite graphic sexually. HW is primarily a PCa website - dealing with fighting cancer - and yes, the attendant side effects from treatment.

But for really blunt, no-holds-barred questions, it was off limits. So, I have just launched a new website - still in its infancy - for ED. As it turns out, I think it is the only stand alone ED support site on the net. I will be adding pages describing each level of treatment - complete with graphic, explanatory photos. My wife says guys don't read instructions, they can only follow pictures. Sigh...she's right. But right now, the Forum has just begun and I would love your input.

FrankTalk.org (note ORG...not COM) is my wife's name for the site, since that is what it will be for. Guys able to ask ANYTHING at all about ED. no shame - talk however you're comfortable.

To keep the site safe from pervs and spammers and creepy people, you need to register, get approved and each post at this point gets approved. The site admins insist I have to do this to keep it safe. They are probably right, and I'll do whatever it takes to make this a safe place for guys to get some help about this subject that affects so many of us....even the non-Pca guys.

I offer it to whoever needs it.
Thanks
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/30/2009 8:26 AM (GMT -6)   
Paul, sounds like an excellent idea. I suspect it's a lot of work to set up a web site and maintain it. Good on you!

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 7/30/2009 8:44 AM (GMT -6)   
Paul,
I like the idea. I am waiting on my surgery in two weeks and attend a Local Prostate Cancer support group meeting one time a month.
It seems that the men at the support group only want to talk about Urine control and the surgery itself. I've tried to ask about the sexual side of things but they always seem to be embarrassed or not want to talk about it and the subject gets dropped.
Age at diagnosis 54, PSA 6.1
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7
              2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery Scheduled 08/12/09 at Vanderbilt, Nashville TN. 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/30/2009 10:26 AM (GMT -6)   
Hi Paul,
Good luck on this project. I think it is a great idea. It will serve as an excellent suppliment to forum boards like HW and many others. As you know we have a HW rule that limits certain graphic content and the reason is HW does not want to have to place warning labels and require logins on it's website to view it's discussions on such matters ~ but we have a relaxed policy in the prostate cancer and AIDS forums as graphic discusion is medically part of the illness. The other forums here at HW don't like it much that we get exceptions, but it is part of the disease that we have issues with erections and ways to combat it with somewhat erotic discussions. I personally have found in the past that holding the discussion to the letter of the rules is a difficult task, and frankly unwanted moderating. Since we have changed the approach to allowing it if we can medically classify the discussion, and when it comes to links, we allow graphic links if they are approved and have proper warning messages. One such example is the links that Gene214 has provided that includes actual video demonstrations of how implants operate. We encourage the guys to be aware of our youthful watchers, even rare as they are, so that we don't get hit with an XXX rating to the website.  ED discussions are fine here and absolutely on topic. 
 
Your website provides a method of taking it further and is properly setup with logins and warnings. This is a good thing for those who would like to be even more graphic...
 
Again, thanks Paul...

Tony


 Age 47 (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 (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 7/30/2009 10:45:28 AM (GMT-6)


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 7/31/2009 6:07 PM (GMT -6)   
Tony,
Thanks. Just wanted to reiterate that it was NOT due to discontent with HW that lead to this. It is more the realization that guys need a place to go that is like HW in many ways, but able to be a bit more themselves in the dialogue. My surgeon, who encouraged me in this, told me that he separates the guys into two group(Pca fighters and ED fighters) since the needs of the two groups of men are so different.
Thanks for your support.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/31/2009 6:11 PM (GMT -6)   
Paul, I hadn't had the chance yet to thank you for what you are doing. I think it is a good thing and it looks like you are putting a lot of thought into the mechanics of it. ED is a major issue with most men with PC, and a place where you can lay all your cards on the table, and talk frankly and openly is a good thing. Collectively, I think our group has an amazing amount of experience, research, and knowledge.

Good luck with it, I will have to check it out soon. I personally was one of the fortunate few, and do not currently have any ED problems, but not to say with future treatments that may all change.

I support what you are doing.

David in SC
Age 57, 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
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, again
 
 


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 7/31/2009 9:31 PM (GMT -6)   
Tony --- I just wanted to say, excellent approach and post above. I think you've hit an excellent balance. (As a sometime writer, I hate to use the same word twice but "excellent" is THE word here.)

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/1/2009 12:39 PM (GMT -6)   
Thank you, Sheldon,
Not always easy to be diplomatic, but in the role of a facillitator you have to do the best you can...We don't have many young folks coming here, but we do in the other forums at HW. It would be a shame to block freely viewing this valuable site due to graphic content in one forum. I am certain those visiting the Lyme disease and other forums wouldn't understand...

Tony
 Age 47 (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 (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 8/1/2009 3:34 PM (GMT -6)   

Hi Paul,

I think your forum is a great idea. I'm stuck in the twilight zone between my RRP and my first post-op PSA (some anxiety, of course). I seem to healing very good except in one department. The VED certainly helps, meds aren't right now.

I know I'm very lucky to have recovered quickly from surgery and for all practical purposes, I was probably continent within a day of catheter removal even though I wore pads for a week or so.

My prostate cancer Dx was last December. I had surgery in May 09. I hope the surgery removed the cancer. I have no problems with leakage of any sort from my bladder.

I have issues with rectal pain, penis pain and ED since surgery. Doc says rectal pain should subside, penis pain unknown...off to a specialist and ED...well, no guarantee there.

Doc told my wife "both nerves spared" after surgery. I've had some half-mast activity that has not improved, even with meds. VED gets me to maybe 75% for some fleeting moments (not ready for the rubber-slide-on-vice-grip yet). But, at least it's consistent and it's therapy and I will continue. Orgasms stink and are even uncomfortable sometimes.

Good luck and thank-you for your efforts.

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
14 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology (see below). Prostate about 40 cm sq.
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: Negative
Barium enema X-ray (March 09 due to several days of blood in stool)
MRI with endorectal coil (April 09 as part of a study)
3D advanced TRUS (April 09 as part of a study)
CT (April 09 as part of a study)
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. 2 cores "foamy" and suspicious. All +ve cores, 3+3 GS 6.
Open RP surgery: May 5/09 Surgeon spoke to my wife and was very positive. Said both nerve bundles spared and not damaged. Bilateral lymph node dissection performed. Discharged 48 hours after surgery. Staples out, catheter out and pathology sheduled for May 21.
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.
Physical State: Getting back to working out slowly. Urinary control pretty much from the time of catheter removal. Rectal pain, sometimes bad but, told is normal. Erectile function at best 25-30% of presurgery. Trying Levitra...first 10 mG dose gave me nasal congestion, 50% chubby and a 24 hour headache...may go away with more use or change of meds. Considering pump. Recovery from surgery going very well.
Mental State: Pre-surgery anxiety gone. Positive attitude. Some anxiety about seeing radiation oncologist and upcoming 3 month PSA. 


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 8/1/2009 4:55 PM (GMT -6)   
Great idea. I am sure it will be great but lots of work in the process.
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 8/1/2009 9:39 PM (GMT -6)   
PAUL:  What can I say that has not already been said.  Wow  this is great such a need.  Thanks for you time and efforts.  So many of us with questions and frustrations...
 
Thanks
Jeff
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Timmy77
Regular Member


Date Joined Jul 2009
Total Posts : 40
   Posted 8/1/2009 11:31 PM (GMT -6)   
Tony I will have to check it out This forum has been great but the mor the merrier ok, The marry her , Thats what I want to find out about , I married her so I want to keep her happy (and me)
Thanks
Timmy77
48 yrs old
Robotic RP
6-15 2009
Surviver


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/2/2009 2:37 PM (GMT -6)   
Paul, Thanks for putting this together. As I am only 12 days post surgery I don't know if I will need it. But, it sure is good to know it's out there.
Thanks
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
Radical prostatectomy by Da Vinci on 7/21/2009.
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and Pathology report received
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


Dandapani
Regular Member


Date Joined Jan 2009
Total Posts : 62
   Posted 8/2/2009 6:24 PM (GMT -6)   
Ok, I signed up. Used same handle. See you guys over there.
Dan

PC diagnosis @ 53 YO
PSA: 3.4 - 3.7 for preceeding 10 years, new GP advised Urologist visit

09/18/08 12 plug biopsy
09/29/08 PC diagnosis, 1 of 12 plugs, 5% cancer, Gleason 3+3 (6), left side plug w/cancer
12/17/08 da Vinci robotic radical prostatectomy, lab confirmed biopsy, 5%, PIN rest of prostrate, negative margins
12/29/08 catheter removed

03/24/09 1st PSA blood draw, < 0.1% "undetectable"
07/07/09 2nd PSA blood draw, < 0.1% "undetectable"

current status: 1 extra light pad/day, dry overnight; essentially ED, no luck with oral drugs


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 8/2/2009 6:29 PM (GMT -6)   
Great idea Paul.  I'll stop by and check it out one of these days.  It definitely sounds like something we need.  David
Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 9:38 AM (GMT -6)
There are a total of 2,973,595 posts in 326,113 threads.
View Active Threads


Who's Online
This forum has 161103 registered members. Please welcome our newest member, jrobinson1289.
420 Guest(s), 8 Registered Member(s) are currently online.  Details
GoBucks, YoungSuffererCanada, 1000Daisies, NutMeg1987, WalkingbyFaith, Hardlyrob, ExhaustedGirl1, ChickenArise