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Age, PSA, Gleason, treatment option and incontinence/ED results

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Posted 6/12/2008 1:56 AM (GMT 0)
Curious to know your age, PSA, Gleason, treatment option and how things went/are going with continence and ED.

I was 56 at time of diagnosis/surgery, PSA 14, post-op Gleason 9, open surgery.....still slightly incontinent....a few leaks a day.... after almost 7 months.  Still impotent...using Viagra, pump and injections.

If ED is no longer an issue, it would be interesting to know what progress you experienced when....such as impotent for X months, then 50%, then whatever....and so on.

Posted 6/12/2008 2:23 AM (GMT 0)
Age 61, PSA 7.6, Gleason 3+3/6, open radical prostatectomy, continent 2 days after removal of catheter, still nothing in the ED department after 8 1/2 mts., using generic Viagra, pump and Trimix injections.  3rd and 6mt PSA's <.1

 

Posted 6/12/2008 3:17 AM (GMT 0)

Age 58. PSA 1.7 nodule felt. Pre surgery biopsy gleason 4+4 =8 open radical surgery, nodes and margins clean. Post 4+3 =7. No continence problems after catheter removal, no ED but better with viagra. Biopsy 6-08 nodule felt and cancerous, radiation tomotherapy to start June 19th for 8 weeks.

Bob

Posted 6/12/2008 3:22 AM (GMT 0)
Hi DanmanBob,
As you can see by my signature, I'm almost 72 now. Took me a while, but after 18month+ now, I'm at about 90% to pre op condition without meds. With meds probably 100% (can't remember.........getting old).
At 6 month I was probably at about 40%; at 12 Month about 75% (all without meds).
As you can see, it was a slow but steady progress.
Viagra, or the equivalent thereof, didn't make as much of a different to me as it seams to do for other men.
I'm not complaining. I just wish that my PSA would stop rearing its ugly head!
All the best to you and don't give up hope.

Magaboo
Posted 6/12/2008 3:46 AM (GMT 0)

Great Post Danman,

Here's mine:
Age 44 at Dx. (46 in two weeks) confused
Treatment Option: DaVinci (Failed), Added IMRT, HT, supplements ~ Able to reach undetectable!!!!! yeah
ED: No Function since HT eyes
Continence: 98% Good.  (2% if I have wine, dribble light) scool
15 Mos, Post Op. smurf

Considering...I am a lucky man. :-)

Tony

Posted 6/12/2008 5:23 AM (GMT 0)
59 at diagnosis..........PSA reached 4.1 at one stage.......DRE clear......Gleason 4+3=7 at biopsy
Da Vinci robotic......focal extraprostatic extention but surgical margins clear.....Gleason upped to 4+4=8
Incontinence fairly good after 3 months but at 9 months if I really physically exert myself and forget to squeeze I'll lose a few drops. .......E.D. ----alas that's another story. Nerves could not be saved (because of invasion) and drugs do nothing noticable although I maintain a 1/2 tab of Cialis every second day. Vaccuum pump used fairly regularly to try to maintain condition. Nine months PSA undetectable.
Bill
Posted 6/12/2008 11:59 AM (GMT 0)
Age: 54

PSA: 1.9

Pre Surgery Gleason: 3+3 = 6

Post Surgery Gleason: 3+4 = 7

Continence: 95% good from day one

ED: 70% functional. Actually I don't see any difference with Cialis or Levitra both 20mg.

First post Surgery PSA scheduled for 6/17/08

Posted 6/12/2008 12:11 PM (GMT 0)

Age 49 when diagnosed; PSA 3.0; Gleason 6; DaVinci surgery May 21, 2007; pathology report was Gleason 7 (3+4), negative margins, negative capsular penetration, negative seminal vesicals, lymph nodes left intact (common practice I was told by my surgeon if he feels that there is an excellent chance the cancer is confined to the prostate); out of pads at five weeks after catheter removal, although I would still experience some stress incontinence at times for the next several weeks; first feelings of semi-erections felt about three weeks after catheter removal

 

One year post-op all my PSA tests (five) have been <0.1, fully continent, still using Cialis but generally can achieve erections that are about 80% of what I could achieve before surgery.

 

Hope this helps.

 

Jack

Posted 6/12/2008 1:04 PM (GMT 0)
48 at diagnosis 11/8/06, PSA 6.22, Gleason 3+3=6. DaVinci January 2007, Pathology report 4+3=7 capsul contained but very close to margin hard to call. Dry by 14 weeks never used more that one pad after the first two days. ED run and running with out any medication with in one month. PSA returned on 3rd post surgery test, 10 months after surgery - just completed 36 salvage radiation treatments on June 4th 2008. Things still holding and working and now waiting to see if PSA begins to retreat.

Norskie
Posted 6/12/2008 5:16 PM (GMT 0)
I was 46 when diagnosed following biopsy due to an elevated PSA of 9.9. My pre-op Gleason was 3 + 3, the same post op. I chose DaVinci surgery, negative margins and lymph nodes. I had no issues with continence, only used one pad and am grateful for this. ED has been a longer battle, nothing even with Cialis, Viagra for a couple of months. Started injections (Bimix) with success at about approx 4 mos. At about six months, I started to have some natural erections with meds, but not usable. I have noticed, however, that the situation continues to improve, and can now have a usable erection without meds, it just doesn't last long enough before going away. This also seems to be resolving with passage of time. It is my hope that soon the meds will be like a firetruck, great if you need it, but hopefully you never have to call on it!!
Posted 6/12/2008 6:19 PM (GMT 0)

Like it says below, my age at diagnosis was 54, nodule felt during DRE, highest PSA was 4.7, dropped to 3.7 from Sept to Dec before surgery, had RP at Emory, Gleason 3+4=7. Continent 2 weeks post catheter removal.  Have erections without help, but cannot sustain and have intercourse without Lavetra.  Feel Blessed.

Ron

Posted 6/12/2008 6:34 PM (GMT 0)

Surgery at 54. Pre-surgery 3+3 (6) one of ten needles 1%. PSA 6.2 T1C

DaVinci March 28th, 3+4 (7) sad   10% total, both lobes, no prostatic extension, seminal vessels clear, fat around prostate clear,cancer considered contained with a bad margin sad   T2C PSA undetectable, Oncologist recomending radiation at 3 months..

At 10 weeks continence 1-2 light pads daily, night mostly dry.  Walking lifting still leak alot.  I feel I am making progress. scool

ED-had erection with catheter in (ouch). Early after surgery morning erections. Unusual for I did not have them much at all before surgery.  Morning erections gone now, able to get erections with visual and mental stimulation.  Better with viagra but o.k. without.  Trying intercourse but the leaking is definetly a problem.  I still feel lucky in this area. tongue

Frank

Posted 6/12/2008 8:06 PM (GMT 0)
Interesting post Danman....all the info makes for good reading.

Age: 62
Diagnosis PSA: 4.57
Positive DRE
Failed Da Vinci
supplemental: IMRT 35 zaps, HT (Lupron) 2 years.
ED: No function
Continence: 95% down from 100% had a cysto 6 mos ago.
14 Months Post Op.
Feel fine, see the doc every 3 mos.
Posted 6/12/2008 9:53 PM (GMT 0)
I don't know if this is a help or a hindrance: I have no ED problems to date I have very good control I was told by my surgeon the day I was interviewed for possible surgery I would be no worse , OR BETTER than I was on the day of surgery other than some time for healing which went very well . Of course thats the good news, I still had/have cancer which I've found to be with most cases that have had a positive margin I am Finished with “Proton” radiation therapy as of February and awaiting further PSA results of which I have very positive feelings about . I've heard a lot about ED. Not having a problem with I am uncertain how to respond again the Cancer I have felt would be the main focus anything else is just a bonus.
Posted 6/12/2008 10:14 PM (GMT 0)
I was diagnosed June of 2007, nodule felt on prostate during DRE intial PSA was 13.5, had biopsy next day and surgery two weeks later, day before surgery psa had risen to 16.3. A RP was attempted however the lymph node disection came back positive for three nodes so surgery was aborted. I then went on Lupron, 44 IMRT's, 20 days of Casodex. I have been impotent since surgery and so far no medication has helped that. Just last week was put back on Casodex due to testosterone rising.
Great post Tony, thanks a bunch

peace and love
Dale
Posted 6/13/2008 4:36 AM (GMT 0)
Hi Danman Bob,

See signature for a lot of the info you wanted.

Fairly continent 6 weeks after surgery.  Stress incontinence remaining, but not bad.

ED still an issue after 10 months.  Doing rehab via Osbon vacuum device and ED prescription drugs.  Injections may be in my future.  However, surgeon says she's seen improvement in patients between 12 and 24 months following surgery as well.

Great post... thank you.

Posted 6/13/2008 6:10 AM (GMT 0)
im as follows,43 y.o.@ diognosis,gleason 6 with 6 core biopsy had divinct may 29th 08  just 15 days ago using 1 pad a day,none at night 2 days after cath removal had good usable sex with viagra no e,d, before surgery consider myself lucky sure it w[ll be better in time /post surgery gleason 7     

Posted 6/13/2008 11:43 AM (GMT 0)

i am 48.  surgery (robotic may 9).  no erection since about 1 month before surgery.  doctor thinks it was stress related.  i am dry during the day with the exception of some leakage when i stand up.  also, if i have a full bladder i can't hold it long.  night time i get up about 3 or 4 times to go to the bathroom.  if i am in a deep sleep i wake up with pads full.   i am happy with the progress am continuing my kegels 2 times a day.  1 month psa .04.  i am taking it a day at a time. 

Posted 6/14/2008 3:40 AM (GMT 0)
Great Post Bob.. all of us can use that info and statistics for comparison,

i Have read every response as well , mostly it seems that with open surgery the time lines are the same (given it is Nerve sparing one) and a bit faster recovery with the DaVnci.

Today i am exactly one year post op.

open Surgery June 2007 at age 53 , Dr. Christopher Johnson St. Francis Hospital , Long Island NY

Psa next to 0 at 1, 3, 6 and 12 months.
Fully continent the day after catheter removal

ED: at 3 months no response ,with or without oral meds
at 6 months seing some improvements , at 50 %wit Meds
Using VED for therapy and meds (Viagra) and at 9 months 70%
at one year 80% without any help (meds or Pump) an 90% with Meds

Was told today by my surgeon that i a right on schedule !!! so i am feeling blessed as well !!
Good Luck and be patient it does take time , and you on the right path!!

GB
:-) :-)
Posted 6/14/2008 3:31 PM (GMT 0)

Hi

No surgery but may I participate?

Age 68 at DX

PSA 4.9 - 7.7 - 3.3 - 6.24

Gleason 10 down graded to 9 by MD Anderson

The only incontinence problem I have had is frequent going and weak flow.

I had already been into advancing ED for over 10 years.  By the time of DX I was already forgetting what an erection was for.

I had some success with the little blue pill but it sure was expensive in the beginning. 

Now with Hormone THerapy I don't much think about it. 

Maybe once this cancer is killed I will think again about how to achieve an erection and what to do with it.

An understanding wife is sure a blessing!

Richard yeah tongue yeah

Posted 6/15/2008 4:45 PM (GMT 0)
I was 70 at time of robotic surgery, PSA 5.52 Gleason 7.  Given option of surgery, radiation treatment (8wks) or seeds plus radiation treatment(4wks) watchful waiting was not reccommended nor were other newer forms of treatment discribed as experemental??   post surgery PSA 0 at 4 weeks.  tongue Still incontinent at 6 weeks 7/8 pads day.  mad Most problems when walking or active. Have had BM problems therefore must stay on stool softeners.
Posted 6/15/2008 8:02 PM (GMT 0)

yeah  allypm

Would you mind listing the treatments that were indicated as experimental?  I assume the list was provided by your urologist or doctor?

Thanks and the best to you in your recovery

Richard yeah tongue yeah

Posted 6/15/2008 10:27 PM (GMT 0)
Age 62 during treatment.

PSA 5.0 (12% free)'

Gleason 3+3 = 6

IGRT (External beam radiation)'

No incontinence, or ED issues.
Posted 6/16/2008 12:46 AM (GMT 0)
I echo smilingoldcoot's comments on ED. That's not a big concern for me at this stage, since I am still incontinent. My wife and I have actually grown much closer through all of this.

Nine weeks post-op with the Da Vinci robotic surgery and down to two pads every 24 hours. Just did a strenuous three-mile hike at 8,200 feet with my daughter today -- the most strenuous exercise I've done since surgery. I walk about 1 1/2 miles every day.
Posted 6/16/2008 3:06 AM (GMT 0)
HT, IMRT and HDR Brachytherapy - no ED and no incontinence.

But, reading all above and what seem to be more and more similar stories on this site of late, I'm reminded of when a urologist told me he was at a meeting with several of the top urologists in the country and they spoke of how they "wished they could come up with a better treatment than the barbaric one currently in use" - speaking, of course, of prostatectomy.

I feel for you guys.

-Les
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