Venous control while erect, my PSA results, incontinence Q&A and other info from today's uro visit

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DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/2/2008 3:56 PM (GMT -6)   
I tease the lady who takes my co-pay that I single-handedly keep their group in business.  If I have questions, I schedule an appointment and see the urologist, such as this afternoon.
 
My latest PSA of 0.1 - As most of you know, the level at which a PSA is considered undetectable depends upon the assay being used.  Some register no lower than 0.1, others 0.07, etc.  My uro group uses a lab that uses an assay with 0.1 as the lowest level, so my latest reading is considered undetectable.
 
Radiation likely in my future - The doc said today that despite an undetectable PSA, he will PROBABLY recommend radiation later this year, even if the PSA remains at the same level.  The reason is that my Gleason score was 9 (very high) and the higher the Gleason score, the more likely it is that cancer will return.
 
Leaking urine while erect - Did not have this problem the first two times I used injections, but did have it the most recent time.  He said it is not uncommon.  Things he suggested to minimize this unpleasant situation:
 
1. Urinate several minutes before injecting.
 
2. Significantly reduce fluid intake the last couple of hours before injecting.
 
3. Try an Actis Venous Flow Controller.  The Actis device is an adjustable, reusable ring that can be tightened as much or as little as needed.  Designed for men with venous leakage to help them with ED, it also compresses the urethra and therefore does not allow much if any urine to escape.  Here is a link to info about using this device - http://www.phoenix5.org/sexaids/other/actis.html - and another link to the website of the company that produces it (see order link in left column of linked page) http://www.vivus.com/main.taf?p=2,2
 
4. Wear a condom if all else fails.
 
Found this incontinence Q&A while doing some research...worth reading for anyone dealing with that issue, in my opinion - http://www.drcatalona.com/qa/arch_continence.asp
 
Inject-Ease Automatic Needle Injector - Uro asked to see what I am using.  He said it looks fine to him as a low priced option for autoinjecting.
 
DanMan Bob


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

Post Edited (DanmanBob) : 5/2/2008 4:41:28 PM (GMT-6)


DanmanBob
Regular Member


Date Joined Feb 2008
Total Posts : 467
   Posted 5/3/2008 9:56 AM (GMT -6)   
As I noted, my urologist will probably recommend radiation in a few months, despite an undetectable PSA.  The reason is that a very high Gleason score is an indicator of a likely recurrence eventually.
 
For those who had radiation after surgery, please share your insights.
 
Specifically:
 
1. What type of radiation did you undergo, how many sessions and so on?
 
2. What obvious side effects did you experience - tiredness, bleeding, incontinence, other?
 
3. If you had regained all or partial erectile function prior to radiation, what impact did the radiation have upon your erectile function and recovery?
 
Many thanks.
 
DanMan Bob


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

Post Edited (DanmanBob) : 5/3/2008 9:59:01 AM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/3/2008 10:53 AM (GMT -6)   
Hi Danman Bob,
My PSA was 4+3 but the 4 combined with the 4 positive margins, EPE to the pelvic bone, and the bilateral seminal involvement pretty much had me in the same boat even after my PSA dropped to undetectable post surgery. None of the doctors were satisfied that surgery would be enough. I studied all the techniques for delivering radiation and eventually decided on standard IMRT. All the talk about accuracy of how the different techniques were, I eventually decided on a technique that would "shotgun" the area more rather than pin point it. It's funny, but I am certain that if I had chosen RT as a primary treatment, I probably would have paid better attention to Tomotherapy, Proton, or IGRT so that the side effects would not have been as great. There is no doubt in my mind that we would have left residual disease with what I was dealing with, and that surgery was the right decision. And after surgery, with this grossly abnormal pathology, I felt I did not need pinpoint accuracy techniques because the cancer was spread all over the prostate area and could not be pin pointed to my satisfaction. That stated, after IMRT, I am doing well woth no noticable side effects. I do have some fatigue but after surgery, HT, and RT, if I didn't expect it, I wasn't prepared. Proper attention was paid so not to damage other organs, but I achieved higher gray to the prostate bed and surrounding facia tissue. My primary oncologist still feels that RT would not help much, and he may be right, but if it even helped a little, it was worth it. No incontinance, and no erections, No libido either. So the HT is working too. Dang it.

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


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 5/5/2008 2:54 PM (GMT -6)   
Fortunately I have not had urine leakage during erections, but I am very conscious not to drink anything for a couple of hours prior to injecting, perhaps this is why. I can see where this would be a problem, but I think it is one that can be outsmarted.
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, more notable over last month
with Viagra 100 mg.
Success with BiMix

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