Curiosity about ED

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STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 7/7/2010 11:54 AM (GMT -6)   
One of the more amusing things post surgery is the number of people who are concerned about any ED that I might have. As far as I know they never cared before and I don't believe I've given a seconds thought to their abilities. This past weekend at least two different people asked my wife how I was doing (with a bit of hemming and hawing and not stating it outright).
Of course, no one ask ever asked me directly but always obliquely through my wife.

Is this common?

(for the record - I'm fine now. It took just under a year. Do those pills expire? I've got 50 or so just sitting in a drawer)
Diagnosed at 54
PSA 8.7 Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7 Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09 Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5 T3b
Catheter out at 2 weeks no nighttime incontinence Pad free week 5
PSA 6/6/09 <0.1; 9/10/09 <0.1; 3/11/10 <0.1


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 7/7/2010 12:00 PM (GMT -6)   
Most of the people I talk to are unaware that ED can be a side effect...

Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 7/7/2010 12:22 PM (GMT -6)   
not ED, and also not incontinence.  most sound like they know i've got a big surgery scar in front, and it's a rehab just like my 2 hernia surgeries, so most of them, i don't tell any different....i can't imagine ANY of my friends or family asking MY WIFE how my performance is progressing....ugh
bob

Age@dx: 55

5/05             PSA test 1.8  --12/19/07  PSA test 3.7  --7/25/08    PSA test: 4.7

8/26/08        1st Prostate Biopsy: 3 samples out of 6 have irregular cells

11/25/08      PSA test: 6.5

12/11/08      2nd Prostate Biopsy :  of 12 samples, 3 are cancer, and all other 9 are irregular.  original NJ lab sent samples to Johns Hopkins for special reading.  Gleason 3+3=6.  now:read book, and think about options: radiation, surgery, etc

1/22/09        Radical Retropubic Prostatectomy.  main issue was use of BOTH pre-donated units of blood during surgery, and then required 2 additional units in recovery, before going to room

1/25/09        Released from hospital. No drive, no lift >5 lb

1/28/09        Pathology results from removed tissue:  Cancer was seen on 10% of gland, lymph nodes & SV were benign, nothing seen outside of the prostate.  One area of cancer extended right up to edge, but not beyond.  Gleason was re-typed as 3+4=7, staged T2c

2/13/09        PSA=0.1

3/6/09          6week appt, start back to work Monday, 3/9.  script for Cialis

6/8/09          PSA=0.1

10/9/09        PSA=0.1

2/10/10        PSA=0.3 discussed possibility of radiotherapy and/or hormone.

4/7/10          PSA= 0.4  Recurrence of the cancer is probable. Referred me to RO

5/4/10                   First RT.  RO is recommending 37 treatments x 1.8Gy=66.6 Gy

6/25/10       Final RT. ended up w/ 36 treatments, 64.8 Gy


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5815
   Posted 7/7/2010 6:28 PM (GMT -6)   
Next time some one asks you that, just look them in the eye, clench your fist and give them the hitler salute. thats all they or any one has to know.
age 67 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of Washington Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci, extensive PNI, That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " read it in Bartlet's book of quotation years ago stuck with me, can't remember who said it.


Sharp18
Regular Member


Date Joined Mar 2010
Total Posts : 78
   Posted 7/7/2010 7:30 PM (GMT -6)   
The best option will be not to communicate with these people...

rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 7/7/2010 7:40 PM (GMT -6)   
Most people didn't ask. I volunteered the information about ED and incontience to people I knew to help educate them. I had cancer so was not ashamed to talk about ED or incontience issues.
 
Age 48 at diagnosis
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
22 month  PSA <.04
continent at 10 weeks (no pads!)
ED is still an issue


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 7/7/2010 7:47 PM (GMT -6)   
I deflect the question by saying something like: "Man I am one lucky SOB. I was in perfect health. Everything worked great. I didn't have a hint that I had PCa until my PSA test. Do you know yours? You should! "
Unless the questioner is a woman. Then I just say I am really lucky.


Truth be told, I was not very lucky. I would have be much luckier if I didn't have it at all!
But then I would not have met you guys. Awwh shucks... ;-)

MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 7/7/2010 9:08 PM (GMT -6)   
They never cared before you had your prostate removed, because they read that once a man has his prostate removed they can have a serious bout with ED.

How could they care or even know about your ED prior to RP ?

Thats like saying I tore the ligaments in my knee but before then no asked me if I was able to run ok, now all of a sudden people ask if I can run ok
Stats:
Age: 52, PSA (2008)=1.9
Biopsy on 01/09/09, Gleason Score = 3+3
One (1) out of twelve (12) cores was positive, plus external nodule found
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Post Op Path 3+3
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, <0.01 - 3 months post-op
PSA 1/10 undetectable, <0.01 - 9 months post-op
Trimix provides 100% erectile function


Timm
Regular Member


Date Joined Feb 2010
Total Posts : 83
   Posted 7/8/2010 8:42 AM (GMT -6)   
This is a great post, it never fails to suprise me how people act. Why would anyone want to know about those detail of someones life, is it a power thing?
 
I have had the same questions, I'll have to put together a better answer.  Thank's - Tim
58 yrs.
PSA 6.94  12/10
Bio. 8 of 12 cores pos. 2/1
Gleason   3+4=7
Da Vinci    4/14
Tumor volume  9%
Extraprostatic extension- within margins
Margins    clear
T2c NO Mx
PSA. 6wks. post surgery .01


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 7/8/2010 9:12 AM (GMT -6)   
Could it be these FRIENDS are familiar with the ups and downs of prostate cancer and are asking questions out of genuine concern?
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 7/8/2010 10:06 AM (GMT -6)   
This is precisely the reason why I told very few people. Immediate family, business partner, neighbors. Even some very close friends do not know. We go out to dinner and you would never know I'm packin' pads. I call it Concealed Carry. Like my Ruger LCP.

My health issue is nobody's business but my family's. I have, however, told all of you guys but you don't count. ;-)
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23.
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 Short sphincter
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/9/2010 5:53 AM (GMT -6)   
STW, in my experience most folks (except those who have been through it) truly understand what prostate cancer is and the effect that any treatment can have on quality of life. Many people do the ho-hum when they hear that John was treated for PCa...no big deal (for them)...after all, if you have to get cancer isn't this the one you want (yeah, right)? After treatment, people just assume that life goes on as before, having no idea how much life has changed for us. Unlike other cancer treatments (e.g., chemotheraphy), surgery and radiation don't "show" on the outside. Folks assume that because you look the same way you did before, that nothing has changed.

The guys we know who have been treated for PCa openly discuss their incontinence but ED seems to be a taboo topic for them.

In answer to your post, though, I have never had anyone ask me (male or female) how John "is doing." If anyone did ask, I would answer them honestly and openly, whether they be a man or a woman. Neither John nor I are ashamed or embarassed about his situation and see it as a fact of life post treatment.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 7/9/2010 6:37 AM (GMT -6)   
Sephie - in your opening sentence - did you mean "truly understand" or truely DO NOT understand?
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 7/9/2010 6:48 AM (GMT -6)   
If things get too personal, in true "Lyndon Johnson" fashion, I ask everyone if they would like to see my scar. No takers so far and that usually ends the conversation.
63 yo
V10.46 Dx Feb-09

RRP 5-5-09

No adverse SE

PSA 6-19-09  -0-

PSA 9-21-09  -0-

1 year PSA 5-3-10  -0-



Thriving, not just surviving!


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 7/9/2010 6:56 AM (GMT -6)   
I can totally understand Worried guy's handling of the whole topic - it is just way more comfortable for many people to do that. But if other guys let friends and neighbors know about the PCa, then could it be that these are educated, caring people who simply want you to know that they care and understand? i doubt most people really have a prurient interest in anyone's sex life. Yes, some people do cross a personal line, but most people who are friends don't. There are social clods everywhere. Any friends that have said anything to me, my answer has been exactly what Jeff's was - "I'm lucky".
If they are indeed friends, they just want you to know they understand - they probably are not really curious, and this was their feeble attempt at dancing around a difficult subject.
Paul
www.franktalk.org ED website for PCa guys

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.
Two year PSA - undetectable!


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 7/9/2010 1:44 PM (GMT -6)   
Steve, good catch...yes, I meant truly do NOT understand.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!

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