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mrs. c
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 10/15/2008 12:08 PM (GMT -7)   
Hubby went to the Dr. today and we were both overjoyed and disappointed.  First of all the first PSA was 0 which is wonderful news smilewinkgrin .  But then we moved on to the questions about incontenence and ED, which did not go well in my opinion.  He said, " the use of at least 3 pads per day at this point (RP 8/27/08) is quite normal and that ED is going to be a problem and we will not know where we stand until four years from now".  I asked about viagra or other drugs for my Honey and he said they would not work (you should know most nerves were spared) and prescribed nothing!
 
My concern is this shouldn't my Honey be on some form of rehabilitation at this point?  The Dr's lack of concern/regard for this part of recovery deeply concerns me.  Shouldn't rehab begin as soon as possible and be ongoing instead of just saying, "well your'e cancer free right now, let's wait four years and see where we are at?"  My Honey is 56 and I am 43. It seems a little untimely in that I thought if you don't use it you will loose it.  The Dr. was great as a diagnostic surgeon but we are thinking we should see someone who specializes in the side affects from RP,  any thoughts?
 
Thanks!

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4813
   Posted 10/15/2008 12:33 PM (GMT -7)   
Congrats to going the ZERO Club.....
 
The pad part seems normal to me. The ED part doesn't.
 
I and many guys here were put on Viagra and a pump as soon as the catheter was removed. Both are used to aid the recovery process. My surgeon gave me the impression he wouldn't be concerned abut ED till after one year.


Age 53   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Gleason - 6
(biopsy done March 4, 2008-> 2 of 12)
 
06/25/08 - Da Vinci robotic laparoscopy
10/03/08 - 1st Quarter PSA -> less then .01
 

Surgeon - Keith A. Waguespack, M.D.

Las Colinas and Plano Offices

 


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/15/2008 12:42 PM (GMT -7)   
Well..I will tell you what my urologist/surgeon said to me...give it three months and then we will look into some solutions if not improving by then...not four years. What your doc said is unacceptable in my opinion. I would be looking to another uroligist for a second opinion about the ED issue. You both are quite young and don't need to accept this.

Take charge and get some solutions started as soon as possible. You are only a couple of months out from surgery and could benefit from some form of therapy. And I believe the term "Use it or Lose it" is correctly stated.
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
14 tumors in prostate - largest being 6 cm 


egor
Regular Member


Date Joined Jun 2008
Total Posts : 46
   Posted 10/15/2008 1:47 PM (GMT -7)   
I agree with what's been said. The 3 pads/day after less than 2 months is about normal, but he should start on something for the ED.
I was on a daily Viagra (for 2 weeks) after the first month. I know others who use the pump around the same time after surgery.
The theory, I think, is to "wake up" the nerves to perform.
I'd find another Doc.
Ed
Ed from Rochester, NY 66 years old
PSA 6/06 1.9
4/06 Biopsy 1 core cancerous Gleason 3 + 3 = 6
8/06 Da Vinci Dr. Joseph, Strong Memorial, Rochester, NY
Gleason 3 + 4 = 7, negative margins
3 month PSA .01
6 month PSA .01
9 month PSA .02
1 yr PSA .01
1 1/2 yr PSA .02
2 yr PSA .03
1st collagen 12/07
2nd collagen 3/08
Imiprimine 7/08
still leaking about 120 ml/day 2 - 4 pad
AdVance Male sling procedure 9-05-08
Unable to void, catheter in for 11 days, then self-catheterization
Dry after Catheter removed, no exercise for six weeks from procedure date


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 10/15/2008 1:58 PM (GMT -7)   
Good news on the PSA - I received my "O" a week or so ago following my 9-10-08 prostate removal.  about the pads:  I wish I used just 3 per day. I'm an active person and back to work full-time and I use 6-8 a day 9 (I might be changing more frequently than some other folks, for comfort reasons at work).  My Urologist told me most of his patients don't see much improvement until the period of 3 to 6 months post-surgery.  He urged me to continue with the Kegel exercises.
 
about the ED issue:  I'm taking Cialis and MUSE three times weekly (starting about 3-weeks post-surgery) at the direction of my Urologist and I've seen some improvement, though not sufficient to have intercourse. Orgasm is possible, assisted.  I'm a very patient person, and for me, personally, the ED isn't a particular concern (as to whether it's a month, or a year from now that I regain better ability).  
 
Regarding the 4-year comment from the Urologist:  Given what I've learned about post-surgery practices, that reaction (of your husband's Urologist) does seem odd.  But those of us reading your comments arent privvy to all of the information about your husband's cancer, the surgery and overall treatment post-op.  Why not raise the question during your next visit, or, if it makes you/him more comfortable, telephone the Physicians' Assistant (or nurse if he doesn't have a PA) in the days ahead and ask for a clarification of the remark.  Could be there was some sort of miscommunication.  I'd also discuss the matter with my primary care physician, to learn of his opinon to see if he would support a change in Urologists.  I don't make any medical decisions without first consulting my primary care physician - whom I expect to assist me in managing my healthcare.
 
Mavica

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (19 days post-op)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

 


SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 10/15/2008 2:02 PM (GMT -7)   
Congrats. I agree the 3 pads i normal but after my cath was removed I started on 25mgs of the Blue Pill daily. I would goto somewhere else because my doc was saying not only for ED but for healing process of increasing th eblood flow down there which he sais was essential after surgery to ensure m e that I take everyday.
Age Dx 37, 7/2008
First PSA : 4.17 5/2008
Second PSA After 2 weeks of antibiotics : 3.9 6/2008
DRE: Negative 5/2008
Biopsy : 6 out 12 Postive all on right side, Gleason 7 (3+4).
Bone Scan/CAT Scan: Clear 7/2008
Cystoscope: Normal 7/2008
Prostate MRI: Normal 7/2008
Da Vinci Surgery 7/2008
PostOp: T2c (On Both sides), margins clear, seminal clear, nodes, clear. Gleason 6(3+3).
First PostOp PSA 9/2008: <0.01
2nd PSA 12/2008: Praying for <0.01
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 10/15/2008 2:16 PM (GMT -7)   
Regarding the "healing process" comment of SHU93: My Urologist said the same thing, that he was prescribing the Cialis / MUSE not, primarily, for ED but to aid in the healing process. Maybe the "healing process" in one and the same, but I've read a lot of literature on the post-op period in the case of prostate removal and most of it - maybe all of it - makes reference to some sort of stiumlant medication starting soon after surgery.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (19 days post-op)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

 


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 10/15/2008 5:13 PM (GMT -7)   
I agree that 4 years is quite a long time to do nothing, my surgeon was prescribing me Levitra/Cialis/Viagra at two weeks, just to promote blood flow into the region, not necessarily to achieve erections. I would be insistent that he do something, and if he doesn't, find someone who will, maybe your family doc?
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, 9 Month PSA 0.01
One Year 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


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 10/16/2008 8:21 PM (GMT -7)   
I would look for another Doctor. I was put on Viagra therapy when the cath came out also.
Good Luck,
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     

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