Is there any such thing as absolute dryness after RP?

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IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 12/4/2009 12:28 PM (GMT -6)   
Hello All:
 
I have read different shades of dryness on this forum. From "dry from day one", "dry when lying flat", "dry after 2 weeks" etc to what I am experiencing which is an occasional dripping in the evenings when I am tired 7 months after surgery.
 
My question is: Will there ever be absolute dryness as in the Pre-op days say after x number of months or years? or would we have to live with the occasional stress drip of squirt for the rest of our lives?
 
Any thoughts on this will be very welcome.
 
Thanks!
 
 
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.
> Sept 09 - 3month PSA - Undetectable!


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 12/4/2009 12:42 PM (GMT -6)   
Hi Ike,
 
I can only speak from my own experience, but keep in mind that things seam to vary widely from patient to patient. I was 'dry' (no pads) after about 10 weeks post open RRP with the occasional drop escaping for another month or two. After that I was just like before surgery....totally dry. I'm 73 years old and was 70 when I went under the knife.
I can only hope that you will do as well or, hopefully, better.
All the best to you.
 
Magaboo

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09, = 0.05; July 09, <0.04


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/4/2009 12:43 PM (GMT -6)   
IKE, you will get a wide range of answers. For myself, when I am not on endless catheters, I am completely dry. No drips or leaks once I go dry. Some men are completely dry, but under extreme events like a big unexpected sneeze or fart, or bending to lift something, they may experience a quick squirt of stress incontinence.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


GarthK
Regular Member


Date Joined Feb 2009
Total Posts : 74
   Posted 12/4/2009 1:11 PM (GMT -6)   
I was no longer using pads after about a month and continued to "dry" up even more after that. That said, I still have an occasional drop or two after, as Purg stated, an unexpected sneeze or cough. I also have to be careful when I settle back, have a deep yawn, and really relax as that can cause my sphincter to relax as well, and that's not a Good Thing. :-) Overall, nothing to complain about tho.

Good luck,
Garth
Vitae:
DOB: Q4'46, HT: 5'9", WT: 180
PCa:
PSA: <2.5, DRE: Slight enlargement, one node
Biopsy: 12/08
Cores: 4 of 12+ positive, Gleason: 3+3
Surgery: RRP on 1/21/09
Catheter: 15 days
Pathology:
Adenocarcinoma occupying 5% of prostatic volume (right posterior aspect)
Gleason: 3+2, No extraprostatic extensions, Perineural invasion within prostate only
No angiolymphatic invasion, No seminal vesicle invasion, Clear margins
AJCC: pT2a
Post-op PSA's
3/10/09 < 0.014 (undetectable by machine)
6/10/09 < 0.014 (undetectable by machine)
9/8/09 < 0.014 (undetectable by machine)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4835
   Posted 12/4/2009 2:21 PM (GMT -6)   

Copy and Paste from above:

Some men are completely dry, but under extreme events like a big unexpected sneeze or fart, or bending to lift something, they may experience a quick squirt of stress incontinence.

That's mesmhair

 


Age 54   - 5'11"   205lbs
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
Surgeon - Keith A. Waguespack, M.D.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 12/4/2009 2:59 PM (GMT -6)   
Ike,
I was dry after 5 months but not completely. I tend to drip a couple toward the end of a round of golf when I'm swinging the club. On those days a ware a thin women liner just in case.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/4/2009 4:18 PM (GMT -6)   
I was dry except for a positional stress leak (leaning forward and sideways while sitting on the floor) within 3 days. I have been bone dry, absolutely no leaks, drips or lifting or positional leaks since about 8 months or so. I am as dry now as I ever was before. I was fortunate to have a skilled surgeon, good physiology, was able to accomplish this without kegals after the first week. smilewinkgrin
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/4/2009 4:41 PM (GMT -6)   

Ike,

I would say I was completely dry within 48 hours of catheter removal...although I did wear a pad for about week or so for security. That's probably way ahead of the curve for most and represents a small percentage. Was that my surgeon, my physiology, my level of fitness, luck of the draw or all of the previous? Don't really know.

I'm 7 months post-open. No stress squirts, no leaks, no accidents and...no natural erection. I do have a higher sense of urgency to pee than before. But, that is improving all the time. Trimix injections seem to be waking junior up in the other department.

We're all different and respond differently to treatment.

Mike 


-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months 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: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-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.


IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 12/4/2009 8:38 PM (GMT -6)   
Thanks to you all. It looks like "dry' will remain a subjective word for a while!

Have a good weekend all.
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.
> Sept 09 - 3month PSA - Undetectable!


Mbshine
Regular Member


Date Joined Aug 2008
Total Posts : 67
   Posted 12/5/2009 10:15 AM (GMT -6)   
 
 Good topic...my surgery was 6 weeks ago and after the catheter was removed after 9 days, and a few days of wearing those padded undies, I hve been on one light pad a day, the kind you paste into your briefs.
 
As stated by others, once in awhile a suddeen move, or bending, or lifting triggers a few leaky drops, but ironically the only thing I can ALWAYS connect to a leak is flatulence.
 
Once in awhile there is still a slight burning sensation upon urination but doc says it is normal.
 
Friend who is now 2 years past surgery and does heavy physical labor says every week or so with an especially strenuos move he will leak..
 
So those who are 100 pc "leak free" seem to be blessed.
 
 
mbshine
 
 
MSKCC PROSTATE removed 10-19-09
age 62
good prognosis

jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 12/6/2009 1:20 PM (GMT -6)   
Except for a very rare sneeze and once when I peed on my wife during foreplay, I've been dry since catheter removal.
62yo
V10.46 Dx Feb-09
RRP 5-5-09
No adverse SE
PSA 6-19-09 -0-
PSA 9-21-09 -0-
 
Thriving, not just surviving!
 


defender3
Regular Member


Date Joined Nov 2009
Total Posts : 98
   Posted 12/6/2009 4:37 PM (GMT -6)   
Ike - who did your surgery at Hopkins? I'm considering using them. You can drop me an e-mail if you like.

John

defender3
Regular Member


Date Joined Nov 2009
Total Posts : 98
   Posted 12/6/2009 4:38 PM (GMT -6)   
Ike - I'm considering using Hopkins, who did your surgery? You can drop me an e-mail if you like.


John

IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 12/6/2009 11:32 PM (GMT -6)   
John:

No problem. I have sent you a mail.

Regards
>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.
> Sept 09 - 3month PSA - Undetectable!


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 12/7/2009 11:10 AM (GMT -6)   
I did a survey here a couple of weeks ago. With about 50 samples the results look very similar to those quoted above by codrgolfer. I was trying to see if there was a difference between robotic and open at 3 months and 1 year.
At one year 10.3% of were incontinent - defined as still wearing pads. All were robotic while 55% of the surgeries were robotic.
I will bump the study up again so we can get more data.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
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. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 12/7/2009 4:41 PM (GMT -6)   
One more perspective. I consider myself dry dry dry for months. But the other day while jogging in place, watching TV (which I do a lot) wearing a bathrobe only, all of a sudden I could feel a few sprinkles on my legs and wondered ***?? Off to the bathroom and really only managed to force a dribble or two to empty bladder so it was not as if it were full or anything.

I think particularly if wearing no briefs to hold things sideways or upwards or snug -- if just dangling down, then it might get a drop or two by the gates (with the jouncing of jogging in place needed also).

Hey speaking of squirts, has anyone solved the mystery of WHEN to Last Urinate/Drink to get full bladder before heading to your Uro (when they want a full bladder). You have to make sure it is not too early so you are squirming waiting or too late (to not able it go much). Hard to experiment at home since I am pretty sure driving a car in traffic (on the way to Uro) accelerates urine production etc ....

I know one time I gauged it about an hour before. Got there .. went some .. and then on the way to work started to finally fill up -- it was a race to the porcelain throne for that one!

But I do love that Urine Flow test now .... I just laugh at flow tests now ... like a firehose gushing. Sure beats the stupid annoying BPH days (for me).
Age 58, 195lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- no real effect (thru 11/2009).
04/01/09, 07/07/09, 10/01/09 PSA <0.1 - Stone Was Oxalate stone -- X-ray no stones.
08/09 - started MUSE@1000mcg ... pump&plump - success(80-90%) (alpro ache).
09/09 @500mcg +pump&plump + 2 advil - success(80-90%) - (less Alpro ache).
10/09 TrimixGel (500/300/100mcg): 1st:60%, 2nd:(pump&plump) 60%, 3rd(added 500mcg muse):70-80% -- (no Alpro aches!) but none @ useful hardness!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 12/7/2009 9:11 PM (GMT -6)   

Ike,

The following study recently published that the standard "no pads, no leaks" is acheived in about 30% of surgery patients at the 2 year mark and improvement after that has a low probability.

The recommendation is to adopt this new standard as the current standards of incontinence are all over the place and do not meet patients expectations.

http://prostatecancerinfolink.net/2009/11/23/a-changing-of-the-guard-in-prostate-cancer-research/

JT


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT

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