Going to the Incontinence Specialist today at 1:00. Need advice.

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 5/11/2010 5:28 AM (GMT -6)   
I am a leaker. At 10 months I am still leaking about 220 to 250 ml per day - 8 oz of pee in my pads. I plot the data daily and see that I am improving at a glacially slow rate. A linear prediction shows I will be dry 9/29 this year. A 2nd order curve prediction says it will flatten out but never stop.shakehead I have 400 - 450 ml capacity in the morning - 14 oz. so I know my bladder can hold normally. I can shoot horizontally a solid 38 inches so I know my bladder pressure is normal. I am just leaking all the time. I calculate the leak size to be 70 um - the size of a hair.

My Uro recommended Dr. Mayer the incontinence specialist in the same practice (of course). Everyone in their office says "he is great" "he has done more slings than anyone" "he'll fix you up."
How can they say that without anyone ever looking at the problem?

I don't want a sling specialist now. I want a Uro to stick a scope up there, take a picture and show me the problem!!! Is there scar tissue? Is there a flap of skin blocking my sphincter? Is my sphincter damaged? Is there a 70 um hole? If the answer is "no" to all of the above questions, then tell me I need a sling. Don't just say I need one.

I am a skeptic and fear that since Dr Mayer is a sling specialist, I will need a sling. Reminds me of the quote: "Everything looks like a nail when your only tool is a hammer".

Today is the "meet and greet". No work will be done. Why the heck not? Is this just a chance for them to charge for another office visit?

Enough ranting. Here's are my questions:
Does anyone know Dr Robert Mayer in Rochester NY? If you were leaking more than 220 ml daily, did the sling work for you? (I have followed Tallman's journey and sadly the answer was "No". )
Am I being unreasonable by asking to be scoped before they decide I need the sling?

Thanks guys
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 6=3+3. 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. Did I waste 9 months? Mtg 5/22.
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.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 5/11/2010 6:19 AM (GMT -6)   
Jeff,
I think you are absolutely right to insist that they find exactly what is causing it. For a leak that small, collagen injection may be all you need. that is nothing at all to do. You're right, a simple roto-rooter might be all that is needed.
I think you're being really prudent. good luck. You deserve it.
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!


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1132
   Posted 5/11/2010 6:25 AM (GMT -6)   
I think you are heading in the right direction. I would get all the information before deciding on a sling. You are right it might be something that can be fixed. One thing cancer had taught me, there are lots of specialitsts out there working in fields I have never heard of before.
 
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


Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 5/11/2010 6:55 AM (GMT -6)   
Tough situation as your numbers suggest yours should have resulted in better results. My understanding is prostatectomies involve removing the upper sphincter valve leaving the kegel muscles (floor of the abdominal cavity) to control continence. In gaining access to the prostate for removal, bladder support tissue is severed and need quite a bit of stitching to then support the bladder and keep pressure off the floor of the abdomen. Doubt there's anything to see with a scope and a sling might be the way to go HOWEVER I personally know zip about them.

74 years old - prostate 106 grams - 2 of 12 cores and 3+4=7 PSA just before RP was 6.7
DiVinci at Henry Ford 2/10/2010 - margins clear, nerves spared, nodes clear. Prostate size required extra time to make the urethra bladder re-attachment (Four hours total). Pubic catheter out ten days later. Started out wearing one pad overnight and mornings, one pad afternoons and evenings (I prefer before bedtime showers). Gave up on the overnight pads after six weeks or so getting up a couple of times / night. Gave up on daytime pads after two months around home or local trips. Occasionally Wore a pad if bathroom access might be a problem but have since given them up totally as I have a little time manage control. I love coffee but it and beer are tough on continence so have to be aware. While a sneeze or heavy lift might produce a drip in the tighty whities pads are no longer necessary. Day by day management becomes easier.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 5/11/2010 7:00 AM (GMT -6)   
This initial meeting seems like a waste of time and money to me. He is in the same practice as my Uro and has all the info at his fingertips. But he has not looked inside yet.

I would have more respect for a Uro who at the first meeting listened to my complaint, looked at my data and said "OK let's see what going on up there. Lie down."
If my car is misfiring, I don't make an appointment to discuss the issue then make a second appointment to plug the analyzer in then follow up with a third visit to fix the issue.

Then they tell me he is booked up for the next 4 weeks so I have to wait again. No wonder he is booked up. It takes 3x as many office visits to do something that realistically could be done in one. I guess if I was running a business and had my customers by the balls - or in this case, penis - I might do it the same way.

Paul, You hit the nail right on the head. I too think I might only need a roto-rooter job. But I don't know. I just want the guy to send the snake up there already and check it. I don't need any more testing or discussions about expectations or advantages of sling systems.

I'm just a little frustrated. I'd better eat some breakfast so I'll calm down.
Jeff

Post Edited (Worried Guy) : 5/11/2010 6:03:35 AM (GMT-6)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/11/2010 8:43 AM (GMT -6)   
Jeff:
 
I agree with your instincts. Sounds like you are merely a dollar sign. But, give them a chance and see what happens. Go with your gut.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/11/2010 9:12 AM (GMT -6)   
Jeff, there's no good reason your uro shouldn't scope you and have a look and even take pictures for you. I have had at least 5-6 of them done by my Uro. I need another one now, but still too raw for the dr. to want to do another attempt at this time.

It may not show anything of use to your problem, but then again it may. It still have some amazing color photo's from one of my stricture blockages from last year. He took before and after pictures through the scope of what the blockage looked like, and then after the scarring was removed.

Should be no sweat off his back to scope you, he will still get his money from somebody. It may give you some peace of mind or help you in your process of elimination of what to do next. I know nothing about slings, other then what I read here, but, I would never consent to one unless I was all but 100% certain it would work. It's a lot to go through if it doesn't.

Good luck

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


male_sling_problems
Regular Member


Date Joined Nov 2009
Total Posts : 134
   Posted 5/11/2010 9:49 AM (GMT -6)   
Hello Worried Guy,

You might have read some of my postings under male_sling_problems. A local surgeon described an AdVance sling to me in great detail prior to sling surgery last July, then implanted a Coloplast Virtue sling without my consent. The Virtue sling made my incontinence MUCH worse and the continuous pain was absolutely intolerable.

Last December, Dr. Angermeier, a pelvic reconstruction specialist at The Cleveland Clinic, scoped me; then told me he was quite certain he could fix the mess caused by my local surgeon.

He was 100% correct. He removed the Virtue sling "which was and remains in clinical trials" and implanted American Medical System's AdVance sling. I am now 100% dry for the first time in ten years. Urination is becoming quite normal. I still have considerable pain which I believe is injury to the scrotal nerves, from the Virtue trauma, but I am hoping for improvement.

I would encourage you to review Dr. Kenneth Angermeier's bio on The Cleveland Clinic's website. There is a good probability he could help you with the answers that you are searching for.

Please feel free to email me if I can be helpful.

Best regards,

John

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 5/11/2010 10:02 AM (GMT -6)   
Thanks Guys.
I will let you know what happens - or doesn't happen.

Jeff

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 5/11/2010 10:13 AM (GMT -6)   
Jeff,
Carles Maac on the USTOO Witchata KA web site has a list of doctors who are expert in repairing urinary issues.
JohnT

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


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 5/11/2010 11:33 AM (GMT -6)   
Worried Guy,
I second the comments from John concerning Dr Angermeier at the Cleveland Clinic. He did more for me than just cure my incontinence, but I highly recommend him. It was worth each and every 11 hour drive from South Carolina to Cleveland for my procedures.

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/11/2010 11:51 AM (GMT -6)   
Wigs, where are you at in SC? Didn't know you were from here too.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 5/11/2010 1:45 PM (GMT -6)   
In case, Wigs doesn't get back soon, he's in Holly Hills, I believe...
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 10 gms., margins clear
32 Months: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/11/2010 1:49 PM (GMT -6)   

Jeff:

 

Let us know how things went. I'm hoping the doctor impresses you and that it turns out your instincts might be wrong. You can use a good doctor who will give you some ideas.

 

Mel


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 5/11/2010 3:51 PM (GMT -6)   
Just dropped back in. Yes, I'm from Holly Hill. It's about half-way between Columbia and Charleston 7 miles off I-26.

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/11/2010 5:01 PM (GMT -6)   
Wigs, its been years since I have been to your end of the state, but have been through Holly Hill a time or two in the past. I am in Easley, 10 miles west of Greenville in the Upstate.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 5/11/2010 5:07 PM (GMT -6)   
BACK FROM THE URO UPDATE

I visited with Dr Mayer. As predicted this was mostly a discussion of options: Cunningham clamp, Bulking agent, Sling (Advance) , AUS. No surprises except for him to say that none of the options will be a fool proof fix. I can expect to see a 75% reduction but most likely a thin pad will always be in my future. He looked at my data and said "most people are not such good record keepers". I should not be using the straight line curve as my predictor for continence. Typically the curve levels off at 1 year. There is an asymptote that is above zero leak that most likely will never be reached.
I will use my math skills to see how much that is and when it will occur.

He also mentioned a recent study where men had their pelvic floors examined by MRIs and by looking at the thickness of the floor they could determine the odds of incontinence. (Great. Now you tell me.)

He then gave me a DRE and had me kegel. He said it was very strong. I was able to start and stop my stream which indicated good muscle control. He had me cough five times to see if my fast twitch muscles were working. They were. All systems looked good.

He will put me on the schedule for a flexible cystoscopy 3-6 weeks from now. The equipment in his office is diagnostic only, i.e. he cannot do anything if he sees a problem. If there is scar tissue, then he will reschedule a surgical procedure. He feels this is an unlikely scenario but it is worth checking.

I asked about the potential for drugs therapy so he gave me a two week supply of Vesicare 5mg to try. It reduces spasms. It is unlikely to help, but might. I can give it a try and plot my data. Side effects are dry mouth and constipation.

So, all in all, I'm still leaking, he knows who I am, and I am on the schedule for a sneak peek.

Thanks for your help. I will keep you all informed.
I won't start a "Worried Guy's Journey" just yet.

Jeff

Post Edited (Worried Guy) : 5/12/2010 7:12:37 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/11/2010 5:26 PM (GMT -6)   
Jeff, sounds like it was still a good visit. And you will get your "scoping" in a few weeks. In my situation, I just cringe at the thought of another one, but in your case, sounds like it might be useful. Thought it was odd that he said he can only look, but not do anything with the scope. Even at my dr/s office, he can look, film, dialate, cut if needed, etc., as long as it doesnt require putting a patient under all the way.

Good luck on what lies ahead.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 5/11/2010 5:27 PM (GMT -6)   
The fact that you can start and stop the flow sure sounds promising.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/11/2010 5:58 PM (GMT -6)   
Honestly Jeff, I can't believe you have resisted taking your own peek. With that wonderful camera, you could make a youtube best seller.

As much as we hate to hear it, it is good not to hear snake oil being sold. If he is wrong and you do get total control, who will complain.

Sounds like a guy who covers his bases, and makes an informed decsion. Did you sell him your graphing model ?

I have been pad free since Jan 1, but not squirt free. But, I am getting better. Some of it is learning when to hunker when coughing or sneezing, how not to lift or push, and emptying my bladder when I don't need to.

Only if I am wearing tight jeans, does it ever wick through, which is rarely. The rest of the time, evaporation can take care of it.

Keep up the research and reporting. It appears there are no absolutes to all this stuff.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 5/11/2010 6:22 PM (GMT -6)   
David - I agree with you. I expected that he would have a piece of equipment that could actually do something besides look.. Heck even I could do that. On the other hand. He can see if something is there and then get me to come for yet another visit to get it done.

Gleason7 - The Doc said that fact that I could (almost) stop the flow completely was a very good sign. But I should not set my expectations too high.

Hey Goodlife.
I have to tell you, it is hard for me to resist taking my own pictures. I already used it to check out my sinus cavities before I had nasal polyps removed. I was sitting on the floor in the family room watching the display on the TV as I pushed it past the nose hairs and straight back into my nose. I swear I could see second grade in there. The nose was easy since it is such a large cavity. Theoretically, my wiener schnitzel should be easy too since it's not much longer than a gherkin but the opening size and sensitivity are a little different. Barb won't let me try it. (Whew)
Next time you guys are here, I can give you a demo. Maybe even a free colonoscopy. With the 90 degree tip I can tell you if you're doing your kegels correctly. Everyone gets their own VHS recording to take home and dazzle their wives. It's GFMPH.

Kegelling as I write this,
Jeff

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 5/11/2010 10:03 PM (GMT -6)   
Hi Jeff,
It took me around 15 months to become pad free. At 10 months I was using around 2 to 3 pads per day. Hang in there a little longer before doing anything. I'm so glad I didn't jump the gun and go for a sling or something like that.

Best wishes,
Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Six PSA tests undetectable, latest April 30
Pad free beginning Mar. 18, 2010!


RickyD
Regular Member


Date Joined Dec 2009
Total Posts : 163
   Posted 5/12/2010 4:43 AM (GMT -6)   
Jeff
 
Chin up.  I would keep working those kegels and keep up the record keeping.  As you know I too am keeping detailed records.  I am 22 days since foley catheter removal.  I use no pads at night and have graduated to one "ultra thin" pad in the day.  My leak rate contiunes to improve and is now at 0.40 ml/hour.  My exponential fit to the data implies I will be leak free pad free at day 65.  Well we will see.  But I am encouraged that it continues to improve.
Think positive Jeff.
 
Rick
Age 55,  PSA = 4.97 on 11/17/09, DRE negative,
Biopsy 12/2/09: 1 of 12 cores positive with less than 5% volume
Gleason 3 + 3 = 6
Prostate Size Estimate on 12/2/09 = 28 cc
RALP performed on 4/7/10 at Vanderbilt University MC with Dr. Joseph Smith (3000+ RALPs)
Final Pathology on removed prostate:
Prostatic Adenocarcinoma present bilaterally from apex to base and extending to inked margin at right apex.  Gleason 3 + 3 = 6, stage pT2c
Prostate Size  = 59 grams, Tumor 5% of total prostate volume.
SV negative, EPE negative, PNI present. Lymph nodes - not checked
 
 
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 5/12/2010 5:07 AM (GMT -6)   
All, Thank you for the encouragement. I promise I will not do anything rash. As long as my data curve keeps going down, I will wait. When/if it flattens out for one month then I will do something. There! I set an AS action threshold.

Hey Ricky,
I've got to know... To determine your 0.40 ml/hr leak rate do you only consider daylight/awake hours (16) and divide your total daily by that? Did you measure 6.4g and divide by 16?

My quantities are much greater than yours so I must change pads and put them in a covered bucket. Depending upon the outside temperature, which affects the humidity indoors, I can see about 0.5% evaporation in 10 hours. That means if I weigh a 200.00 gm pad at night it will weigh about 199 in the morning.
I hope someday to find that 1 gram significant.
Jeff

RickyD
Regular Member


Date Joined Dec 2009
Total Posts : 163
   Posted 5/12/2010 10:18 AM (GMT -6)   
Jeff
It is the weight of the pad minus dry weight divided by the minutes the pad has been used times 60. So yes it is the "awake" hours that are considered and the only the time the pad is "installed". Only rarely do I detect any leakage physically. This only when I sneeze, cough, etc and certain positions.
Rick
Age 55,  PSA = 4.97 on 11/17/09, DRE negative,
Biopsy 12/2/09: 1 of 12 cores positive with less than 5% volume
Gleason 3 + 3 = 6
Prostate Size Estimate on 12/2/09 = 28 cc
RALP performed on 4/7/10 at Vanderbilt University MC with Dr. Joseph Smith (3000+ RALPs)
Final Pathology on removed prostate:
Prostatic Adenocarcinoma present bilaterally from apex to base and extending to inked margin at right apex.  Gleason 3 + 3 = 6, stage pT2c
Prostate Size  = 59 grams, Tumor 5% of total prostate volume.
SV negative, EPE negative, PNI present. Lymph nodes - not checked
 
 
 

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