I think I can handle ED, but the Incontinence is what i fear

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fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 1/30/2008 4:50 PM (GMT -7)   
 Hi was diagnosed with PCA in October, am scheduled for Da vinci in March. 59 years old, Gleason 6, ( 3+3) 1Tc one sample 20% out of 13 samples, 24cc Prostae size, oh PSA 4.8. Nothing found DRE. Its the incontinence that really scares me, my job involves working on Office Equiptment, carrying a 25 lb Tool Kit. So you can see how the incontinence is a major factor for me. Do Kegelscan stop and start at will, can hold it forever. My wonderful wife will work with me on the ED, but the otherscares the crap out of me.  Thanks for listening.

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 1/30/2008 5:49 PM (GMT -7)   
Hey Fatcat,

I can't speak for DaVinci but others here will pitch in on that part. I had open surgery on 12/7/06, got the catheter out on 12/13/06 and was continent on 12/14/06. This was unusually fast recovery and I was very lucky and had an excellent surgeon. But it goes to show that we all are different and predicting your continence recovery time is a crapshoot at best.

To give yourself the best chance get plenty of excercise, lose some weight if you are over weight, and do Kegels. These things will help with the ED issue too.

Good luck and please stay with us...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
 
"Patience is essential, attitude is everything."
 


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 1/30/2008 6:01 PM (GMT -7)   
Our numbers and age are real close and like Biker I had good fortune in the continence area right off the bat. Like you I was more scared of this than anything else. some take longer, but they seem to deal with it quite well. Your tool bag might be a bit heavy for awhile.

Randy
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.
Walked a lot
90% control the day the catherter removed.
pad only for a sneeze before the week was out
No pads most of the second week.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 1/30/2008 6:19 PM (GMT -7)   
two weeks out from cath removal. I was dry at night from the first. After one day, I was dry all morning. I am now down to 1-2 pads a day ...and the second one is used after 6:00. Even I can tell I'm almost there. My nurse said the vast majority of guys are dry between two weeks to two months. My doc also said if it were a race, open surgery would beat da Vinci to full continence.
You will be fine.
47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
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 2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
 
 


fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 1/30/2008 7:49 PM (GMT -7)   
  Thanks and yes I'm overwieght,lost 60 lbs so far, walk 2 to 4 miles between work and walking after work.  Again thanks   

jackcc
Regular Member


Date Joined May 2006
Total Posts : 80
   Posted 1/30/2008 7:52 PM (GMT -7)   
Fatcat

Don't worry about that tool kit. You'll have other things to think about. Get yourself a little hand truck to drag the kit around. We just have to adapt.
Try not to worry and just have hope that you'll be lucky like these other guys. No way to tell till it happens.
Good luck .

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 1/30/2008 11:40 PM (GMT -7)   

Hi ~  fatcat & Loved Ones…

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

Knowledge gives us POWER….  POWER takes away the fear.

 

~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~

 

Click on the link just below for important information that will help you ~ help us!!

 

Welcome New Members ~ to HealingWell

 

The information (link) listed above is to help you get started on your journey.

It is a journey best traveled with friends.

Welcome ~ New Friend from all the members here... on HealingWell.com

 

v      bluebird ~  Moderator for Prostate Cancer Forum

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 1/30/2008 11:43 PM (GMT -7)   

Hi fatcat ~

 

We’re sorry for the reason you’re with us, but so glad to have you here!

 

Please feel comfortable to share as if you’ve always been here!  You are new to this disease and as you share information and your feelings with us, the better your new friends on HealingWell can respond to you.

 

Finally, a very warm welcome to you!

 

All the best,

 

Barry


"Idaho" ~ Barry

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  9/11/2007   <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

My web site: http://pca-info.blogspot.com


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 1/31/2008 1:06 AM (GMT -7)   
HI Fatcat,

My husband and I are both overweight too! We are on a health kick ourselves now, so I am able to post this with a little more confidence than I would normally have !

Prior to surgery however, my husband was significantly overweight, and in US terms I think he lost about a stone and a half. Any weight loss is beneficial if you can do it. He did put it back on after the surgery, but that was really just unfortunate. We are dropping it off again now for overall health reasons once again. The pre-op walking and weight loss that he was able to achieve really helped us, so good luck with whatever you can manage.

Hubby also does manual labour and I had to be very bossy post op. I would not let him lift anything for 3 months, but we are lucky in that he is currently not working in paid employment like you. Can you possibly get a trolly? My husband, when he insisted, negotiated with me using a trolly for backyward work, and this worked for us. Even a small load lifted from the ground is a pressure on the very spot you need to avoid stressing in any way. If you could negotiate a trolly for 3 months I reckon that may work? Would your workplace accomodate this if you could organise it?

We believe it is important not to overdo it, for your regaining of continence, and health. The surgery is all too delicate whichever way it is done, and the nerves and tissues and bladder sphincter need time to heal. Our overall details are below for your info.

We would recommend, take it easy on the lifting and do your kegals before surgery. I am not sure of how much 25lb is. Others will probably advise further I guess. The amount/weight of lifting in the weeks after after surgery should be determined by the doctor and treatment, and tends to differ (see all the threads on this), as does the amount of post-op kegals recommended. We asked the doctor specifically, and then I added another 2 weeks to be on the safe side, which is how I came up with the 12 weeks/3 months ban!!

Read as much as you can therefore. We were prepared for the incontinence after waiting 4 months for surgery, and had all the pads, but threw them ALL out at 8 weeks. My husband, like Biker90. used only one pad, and this was dry. Like the few guys who gain early control over ED, there are others like my husband and Biker, that regain immediate control of urine. We are rare, but it is possible.

We found it took many more months for the worry and anxiety to ease overall, but it is all good now. It is perfectly normal to be frightened witless by this disease. We certainly were. However using the pre-op time to research all recovery strategies was well spent. There is lots of info here. Our best wishes to your wonderful "other half".

Good luck and all the best. Lana (posting for my husband CJ).
Creed_three (Lana & CJ)
 
Husband CJ aged 50 yrs (49 years at diagnosis and surgery)
PSA (2002) 2.1.  PSA (Nov 2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing, on Tuesday 17th April 2007 (Sydney, Australia).
Gleeson 3 + 4 = 7.  Cancer confined. Margins all clear, including bladder neck and seminal vessicles. No incontinence (thankfully).
1st PSA 0.01 - undetectable (June 07)
2nd PSA 0.02 - undetectable (Oct 07)
ED post-op recovery:  Good now with Levitra 20mg effective at 7-8 months post surgery (minimal (30-50%) response prior to 6 months on any meds).Continuing with Levitra 20 mg when needed now (at 9 months),  and noticing some gradual, spontaneous response without medication. Next PSA March 2008.


fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 1/31/2008 6:57 AM (GMT -7)   
 Thank you all for the encouragement, my next question, the 2nd love of my life, after my wife, is Motorcycle riding. My wife who has ridden her own bike for 30+ years and I travel a lot of weekends by Bike. My Bike is 900lb plus pounds, not worried about picking it up if I drop it, but just in normal stopping and picking it up from the side stand. Tried posting this question on Motorcycle forums but I guess no one that rides gets PCA, no answers.  Thanks abunch

fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 1/31/2008 7:38 AM (GMT -7)   
 

Chas036, thanks for the heads up, but my gosh, 3 months, my Bike won't even know who I am. Nice ride the old scrambler. The vintage race team I belong to has one of those for vintage dirt and 2 CB 350's for vintage Road events. even 8 weeks will be difficult, here in Florida that's our best riding time. Oh well, maybe.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/31/2008 8:03 AM (GMT -7)   
Fatcat,

That up and down and lifting has been a good thing for you. From now until your surgery, do a simple kegel excersise every time you urinate. Stop the flow at least once or twice and hold it for a count of 5 seconds, no more than 10. No need to go kegel happy with your job / excersise routine. Stop and go is fine.
There really is such a thing as "too much of a good thing".

Picking your bike from a side stand... if you're a good healer, 6 weeks post operative is a pretty good guess. Who say size doesn't matter...900 pounds is a lot to dance with so be careful. From what you describe, you do a lot to keep the large muscle groups strong. You will heal nicely ; >)

Good Luck,

Swim
 


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 1/31/2008 8:07 AM (GMT -7)   
One of the things we may not have stressed enough is walking. If you doctor approves walk as much as you can. Just try not to sit too long even if you just stand up. I started doing laps in the house which was beyond boring but I think the payoff comes as you heal.
I found it hard to sleep in the hospital so I would sleep a bit then off down the halways I would go. Not fast, just walking. One of the nurses said, it was the key to this surgery

Again, ask your doctor about walking and how much so you can be ready.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.
Walked a lot
90% control the day the catherter removed.
pad only for a sneeze before the week was out
No pads most of the second week.


fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 1/31/2008 8:22 AM (GMT -7)   
 I walk between my job and around a park in our neigborhood at least 2.5 miles faithfully at least 5 days a week, 1.5 miles or better 7 days a week. should I do more ?

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 1/31/2008 8:54 AM (GMT -7)   
Hey Fatcat,

I ride a Harley Sportster and the first ride was about 5 months after surgery. I had surgery in December and we have ice until March so I couldn't ride if I wanted to. By that time I had no problems with it.

Good luck,

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
 
"Patience is essential, attitude is everything."
 


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2249
   Posted 1/31/2008 9:08 AM (GMT -7)   
fatcat said...
 I walk between my job and around a park in our neigborhood at least 2.5 miles faithfully at least 5 days a week, 1.5 miles or better 7 days a week. should I do more ?
Any exercises that you can do to strengthen  your abdominal muscles, for example, modified situps or abdominal crunches, will help in your recovery from surgery.  I did these daily for several weeks prior to surgery and it paid off afterwards.  Take care and hang in there...Tim

Age 59 PSA 2.6 PSA velocity quadrupled in 1 yr 
1 of 12 biopsy cores positive (5%) Open surgery June 2006 
Cancer confined to prostate Gleason 5  Post-op PSA's non-detectable


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 1/31/2008 9:50 AM (GMT -7)   
fatcat said...
I walk between my job and around a park in our neigborhood at least 2.5 miles faithfully at least 5 days a week, 1.5 miles or better 7 days a week. should I do more ?


Sounds like you have it going perfect. Now ask you doctor about walking after your surgery and be sure to tell him of your walking now and that will give surgeon a good idea that you are willing to work at recovery in a sensible way.

You are doing so well, this wiil like just another walk in the park. Cheap laugh, I know.
yeah

Just one other thing. While you have time now, maybe you could figure out a way to divide that 25 pound bag in half and use a little luggage cart as someone already said.
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.
Walked a lot
90% control the day the catherter removed.
pad only for a sneeze before the week was out
No pads most of the second week.


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 1/31/2008 6:34 PM (GMT -7)   
Hey Fatcat, I'm probably not one of the guys you want to hear from. I am one of the Long Term Leakers here on HW. Long Story short is that I am now 15 months post op and still use up to 6 full pads a day. I have tied several treatments to try to resolve my condition. I am at the point where I am considering one of the the surgical options to try to fix the problem.
Do not be discouraged by my story. Just know it can happen but there are treatments to help resolve the situation.

Good Luck, KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    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
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!  Almost like before with 100mg Viagra!
    December 5th, 4th post op PSA 0.01!?!?!?   Is that still a 0?  Still leaking!!!!
    Jan. 12th - First visit to Dr. of Traditional Chinese Medicine (Accupuncture) for Incontenance.
   


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 1/31/2008 7:23 PM (GMT -7)   

Hey fatcat, I too was worried sick about incontinence.  I have been riding motorcycles since 1958.  In the interest of taking care of both issues, I chose IMRT.  This is a wonderful forum that is heavily biased toward surgery.  Just the way it is.  The few of us who choose other treatments tend to be quiet.  We are non medical people for the most part and are moved by our personal experiences.  Please pusue all of your options.

Regards,

Bill


August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
Four month post treatment PSA is 1.9.
Seven month PSA is 0.8.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/31/2008 10:51 PM (GMT -7)   
I agree...what Jet said! Check out all the options. Even though you appear to have decided on a treatment plan, knowing what all the available options are, is always a good idea. Good luck and stay strong.


swim
 


fatcat
Regular Member


Date Joined Jan 2008
Total Posts : 31
   Posted 2/1/2008 7:13 AM (GMT -7)   
Since I'm a computer person, I did a lot of research, read Walsh and others. The final kicker was when after an hour with the Radiology Oncologist, who is a partnered with my Uro, told me when I asked what would you do in my situation? Said “I would do the Surgery” Yes I agree, I could keep riding after Radiation and that weighed very heavily on my mind. I have plenty of time to change, but now I’m looking at Surgery. New development, I went yesterday to my Uro office to ask if he would still be there if something happened during my recovery after Surgery. The Surgeon is 6 hours away, well long story short, since he didn’t recommend this surgeon, his recommended one wanted his 20% up front, $6,000.00. Which I don’t have, he converted to pay as you go 2 years ago. I had to talk to local men that had the surgery, asked them, found the one in Birmingham AL. He came highly recommended, over a 1,000 LRP’s, very satisfied patients. You can see where this is going, since I found him, not the Uro’s office, they won’t be able, probably to see me. I might have to go to the ER with my problem. That would force me to find another Uro and all it would in tale.  He is going to let me know shortly. So you can see that my life is a little topsie turvey right now. Very sorry for the long post

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/1/2008 7:26 AM (GMT -7)   
Noo apology necessary. Choosing the right treatment is always a challenge and it is a test of our will sometimes. But you sound like you are content with the method. Good luck on the choice of who does it. Keep up that research.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 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
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
Visit my journey at:
 
STAY POSITIVE!


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 2/1/2008 8:59 AM (GMT -7)   
Not sure how close you are ti Birmingham but here is the follow stuff I went through which should be typical I would think.
One week post op at the Uro's office to remove staples
two weeks from op catherter removed
three weeks from op to asses condtion since cath removal
6 weeks after op for first PSA This coming monday.

Our hospital wanted money up front but our doctor didn't so beware of another cash flow area. Ask for payment plans both at the doctors office and the hospital. I know this might be a good answer but most will take credit cards.

All the doctors I talked to suggested surgery so I understand your decesion and you willl do just fine. In no time you will be posting here helping other new comers by sharing your story.

Randy
12/06/07 DaVinci and open prostate surgery after difficulties in breathing stopped the davinci.
Walked a lot
90% control the day the catherter removed.
pad only for a sneeze before the week was out
No pads most of the second week.


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 2/1/2008 9:22 AM (GMT -7)   
Mr. Cat,

I went back to work at week 4 (we sell produce that comes in 60 pound boxes....) but did not lift more than 20 pounds until week 6 and did not really feel "up to strength" until month 6.
Barring any unforseen complications, I think you will be able to handle your tool belt at week 6.

Incontinence can be managed.  A few seem almost immediately continent and a few others seem to fight it forever.  Over 90% are off pads by week 16. 
You can work in pads while lifting without anyone knowing about it.  I did for ten weeks.
Listen to Swim about the kegels.  (If you have time, you might click on my journey thread about lifting or my incontinence thread about kegels found in my signature.)
You can make yourself a signature that will result in more relevant answers to your posts by clicking on "control panel" in the top left of screen while logged on and scrolling down in your personal profile.  Don't forget to "save" when finished.

The reality of funding surgery is rarely discussed here but it sounds like you are making your arrangements with an experienced surgeon that you trust.  I only encourage you not to delay.
That gleason 6 is likely contained but I would not tempt fate by delaying too long.

Godspeed!

CCedar
ICTHUS



2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
OPEN R P 16FEB07 at age 54. 1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)   Nine month PSA <.008
:)
At 9 months, ED treated with Pump Exercises & 100mg Viagra Daily
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