RRP- How long to feel better?

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mr bill
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Date Joined Sep 2010
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   Posted 9/19/2010 9:27 AM (GMT -6)   
Had robotic prostatectomy on 9/8/10. How long does it take to feel somewhat better and a little ambition to get out of house?

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Post Edited By Moderator (James C.) : 9/19/2010 10:22:38 AM (GMT-6)


Worried Guy
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Date Joined Jul 2009
Total Posts : 3732
   Posted 9/19/2010 9:39 AM (GMT -6)   
Hey Mr Bill. Welcome to Healing well.

I figure you just got the catheter out and you are still wearing pee pads. It is normal to feel miserable and not want to leave the house. Give it a little more time.
I found that getting back to normal routine is greatly enhanced by necessity.
First you go out when you have to take out the pee pad garbage. Then you go out if there's nothing in the refrigerator. Finally you go out when you have to got to work or renew your drivers license.

Good luck to you.
Jeff

It has been a year for me, and my wife practically has to drag me out of the house. ;-)

James C.
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Date Joined Aug 2007
Total Posts : 4462
   Posted 9/19/2010 10:24 AM (GMT -6)   
Mr. Bill, I know it's repetitious, if you've read here a while, but each man heals differently and their recovery times are different. BUT, the more activity you do, yes- even forced when you don't want to, will help you regain your strength and interest in life. So do alittle each day, a little more every day, and get out there. Welcome to the forum, by the way.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

mr bill
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Date Joined Sep 2010
Total Posts : 688
   Posted 9/19/2010 10:46 AM (GMT -6)   
Thanks for the encouragement guys....  Cath is out (not my first rodeo with a long term cath).  Scrotum swollen, feel like a bag of potatoes.  Used to love to get out, now just sittin' round watchin American Pickers re-runs.  Like you say it has only been a short time, maybe I expected to much from what I read about robotics.  Next step will be PSa. Surgeon has all but guaranteed some sort of follow up treatment, except radiation.  
 
Once again, thanks very much for the replies..
 
Mr Bill

tatt2man
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Date Joined Jan 2010
Total Posts : 2842
   Posted 9/19/2010 4:59 PM (GMT 0)   
Bill - wishing you all the best for your recovery - we are all different and heal at different rates - there are a lot of good resources at the top of the website page you can use - any chance of adding a signature so we can see your stats - pre-op PSA , biopsy, pathology, age, general location, etc.

take care
BRONSON
Age: 55 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: Sept 23, 2010 -TBA

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 9/19/2010 11:10 AM (GMT -6)   
Bill
 
My uro surgeon (I did DaVinci) made it pretty clear that the big differences were the size of the incisions and potential blood loss, and days in the hospital. I spent 4 days anyway, so that didn't pan out as a plus. DaVinci being less "invasive" (but then the internal cutting is the same), the actual healing should go better. He did not imply that I would get back to work any quicker with DaVinci.
 
I stayed in a lot with the catheter, had no reason/desire to try to get out in public. I was banned from driving for a month, but once the cath was out (D+7 days), I did force myself to get out and walk for 30 minutes each day, then upped to twice a day. At the beginning, that wasn't very far, as I had to use a cane to stay stable. By the end of a month out, I was up to a one hour session in the morning. Over time that meant longer distance.
 
But I had no want or desire to do it. I just had to force myself to start. The only stops came when it really hurt physically (walked too fast or two far too early, which I did a couple of times).
 
Looks like you are D+11, so not so far out that you should be running marathons. I was at the one early morning, 30 minute, maybe a half mile distance walk phase then. Just had to remember that a pad didn't last 30 minutes at that point, so had some soggy re-entries.
 
Getting down the steps was a big demand on willpower those first days, then coming back in, soggy, and looking at the steps to go back up took a little extra.
 
 

Fairwind
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Date Joined Jul 2010
Total Posts : 3747
   Posted 9/19/2010 11:28 AM (GMT -6)   
Mr. Bill, you have to get up and get moving...I walked a half mile on day two, pee bag strapped to my leg..On day six, took my granddaughter to the zoo, a 4 hour outing walking over a mile..I was continent on day 2 after catheter removal. I make it a point walk a mile every day even if it's only twice around the block..I'm 68 years, It's use it or lose it..Are you doing your kegels?? The more you exercise you do, the better you will feel and the quicker you will recover..Find a nice park with a walking trail and take advantage of it. Push yourself a little, all of a sudden, things start getting easier and easier..
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

mr bill
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Date Joined Sep 2010
Total Posts : 688
   Posted 9/19/2010 11:33 AM (GMT -6)   
My pre-op stats where:
Gleason 9,
PSA was 10.14 (must be doubled because of Proscar).
Biopsy was done on August 19,2010. Bone and CAT scans negative.
Had da Vinci on September 8, 2010 at Cleveland Clinic after Urologist said it was very agressive.  I had done as much research as possible in time between biopsy and surgery.
Came home from hospital on September 11, 2010.
Surgeon has graded me as T3B, Nz or N2 (hard to read) M0.  Still cannot figure this out.  He has said I will probably need follow up, and radiation is pretty much out of the question.
 
This has been an ongoing issue for the past ten years with enlarged prostate. Came home from a trip to Mississippi in 2007 and ended up in ER with urine retention. Urologist in hometown of Erie, PA wanted to do a open prostatectomy, I went to Cleveland and urologist did a photoselective vaporization in 2007.
 
Present age is 66.
Relatively active prior to surgery
 
 
 

mr bill
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Date Joined Sep 2010
Total Posts : 688
   Posted 9/19/2010 11:36 AM (GMT -6)   
As far as contince. Does that just come back? I have been doing Kegels. Seems that nothing is working the way it should be..

Fairwind
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Date Joined Jul 2010
Total Posts : 3747
   Posted 9/19/2010 11:58 AM (GMT -6)   
Are you COMPLETELY incontinent? Does the pee just run out or do you have some control? How about at night?

Our stats are very similar, Gleason 9...Have you read Dr. Pat Walsh's book, "Surviving Prostate Cancer" ?

You need to get a copy of your post surgery pathology report so you know exactly where you stand with this.. Call your surgeon and ask for a copy ASAP.

At some point, you will need to take control over your own treatment...

mr bill
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Date Joined Sep 2010
Total Posts : 688
   Posted 9/19/2010 12:27 PM (GMT -6)   
Pretty much incontinent. Most of the time it just runs out. When I stand up is when I notice and try to control, which usually does not work. I do have Walsh's book, but have not finished yet. I will get a copy of post surgery pathology report tomorrow.
I know I will have to take control. However, I have a tendency to anlayze till I paralyze.

Also, have some nasty scrotal swelling still present ten days after surgery.

Thanks,
Bill

142
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Date Joined Jan 2010
Total Posts : 6949
   Posted 9/19/2010 12:51 PM (GMT -6)   
Bill,
 
I had little trouble at night - still wear a pad just in case, but probably only have a flood once or twice a month. That has been the case from day one post-cath.
 
My Uro said that holding at night was a very good sign for overall continence.
 
Day-time is a whole different story. To a point I agree with Fairwind - you have to get motivated to get out, but I could not physically have done what he did that early, so we represent that "everyone has a different recovery" answer you will get often.
 
I was an open spigot for two months, then started getting better a little at a time.
I was doing kegels from day one post-cath, walking in the morning. For me, for whatever reason, doing the kegels at intervals during the day, then getting out a walking a little made a difference. I believe that changing from one walk a day to multiple shorter ones, pairing the activity in more blocks of less each was the turning point.
 
That said, at DaVinci + 11 months, I still leak (1-3 pads a day). This was probably set in stone by my IGRT this spring, but I still do the Kegels as before.
 
So, work at the Kegels and at least a short walk at intervals. The day I went for my cath removal, the guy before me walked out dry. No Depend pant, no leaks on the floor. Same day, same surgeon, same procedure, I flooded the exam room floor, and was in Depends pants for three months. We are all different.
 
I was also a G4+5, EPE, positive margins all over the place.
 
As to the TNM scores - N can be:
X - not assessed
0- no tested lymph nodes show involvement
1,2,3 - involvement, with the size indicated.
(according to the Cleveland Clinic Guide to Prostate Cancer, 2009 - you can also find that chart on wikipedia, look for the TNM system).
 
You will have to have the path report to know how many lymph nodes were tested and which, if any, were positive.

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 9/19/2010 1:10 PM (GMT -6)   
Mr Bill,

Take things at your own pace, but while going out may not seem like much fun, do make sure you take plenty of exercise if you stay in.
I was able to go out for walks a couple of days before the catheter came out, but had to walk slowly to stop the end of the cath rattling against the inside of my bladder. Then once the cath was out and the pads were in I was going out for walks every day. I say walks because it was easier to go out twice or three times for short walks rather than having one long one that might wear me out. (And I live in an appartment on the 4th floor without a lift so all trips involve stairs on the way back.)
Exercise helps the pain, the aches, the gas the BMs etc.

Change and improvements all happen at such a strange pace it isn't really worth expecting to notice differences from one day to the next or one week to the next, but when your three or six months on you will indeed be able to look back and think, hey not bad!

Make sure you have the right clothing to make being outside with pads work, and if your balls or scrotum are aching tight underwear as opposed to boxers will help hold them up and make them feel a bit cosier. And if things ache take some pain relief (tylenol etc)

regards
Alfred
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

mr bill
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Date Joined Sep 2010
Total Posts : 688
   Posted 9/19/2010 1:29 PM (GMT -6)   
Once again guys, thank you very much. When you are going through this you think you are the only one that may be having a problem, but then find out everyone is having some of the same and some different issues.
Bill

sm416
Regular Member


Date Joined Sep 2010
Total Posts : 27
   Posted 9/19/2010 2:54 PM (GMT -6)   
Good Afternoon Mr. Bill,

Everyone is right, healing takes its own time. I am, like you, new to this sort of thing. My experience I had my surgery on August 9th, and alot has happened in 6 weeks. The best advice I can give is "patience" my friend. Walking is important and others have indicated. I know that 2 days after my surgery my wife and I were at the mall waking (not shopping or breaking any speed records) for 2 hours. We would walk, sit and rest then get up and go again, and the next day we would do the same thing. When she went back to work, I would walk around the house or in the morning go for a short walk. I was doing this with my baggage straped to my thigh. I think I did a lot more kegeling when the catheter was removed. Yes and the potato bag, that will go back to normal after awhile. A suggestion that was made to me is to try to give your swollen members support, I tried loose fitting briefs for a couple of days...wrong...then went to something with a little more support. Incontinence....happens. The more you kegel the better that will get, and the sooner you'll feel like getting out. I see that you were fairly activite before your surgery, I would say that if you work on walking and strive to set that as a goal, again applying patience, you can meet it. Get back into a routine, I know things have changed, but you have given yourself a change to live longer and being active is the best thing you can do for yourself and loved ones.
Wishing you good health and patience,

Steve f
Age: 58 Married 28 Years.
Initial PSA 2.9 elevated to 5.7 before Robotic RP surgery
33% of 1 of 12 biopsy points (left side near bladder)
August 9th Prostectomy with 3D Robotic Surgery
August 16 Staples and cath removed

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/19/2010 3:18 PM (GMT -6)   
The snoozemaster is addictive. Napping, sipping iced tea, and watching reruns on TV can become habitual.

You hopefully will reach a point where you at least walk around the block, or putter in the garage, or take a ride. If you owned a business, I guarantee you you would be out already, checking up on your employees.

I also am a CC grad, and a Gleason 9. I give CC all the credit for my "success" thus far. I'm not willing to roll over and die yet. I am prepared for SRT if my PSA starts to rise, but not until it does. And after that, if it rises again, pass the Lupron and Casodex, or whatever the best solution is.

I'll be coming through Erie next weekend on my way to the GFMPH weeken in Rochester at Worried Guys's house. Wish you felt up to getting out for a couple days. I guarantee you, you would have a great time away from the snoozemaster.

Good luck on your journey.
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
15 month PSA <.01

maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 9/19/2010 3:24 PM (GMT -6)   
Mr. Bill
 
Please use moderation but get off the couch and get back to life.
 
In my case I visited neighbors 2 days after surgery for a radical from the bottom.  By car to their front porch on the next block.  Out into a chair and BS with coffee.  30 minutes and a smile then Good-by.  Home to take a nap from that exausting trip.  Ya, right.  But right at that time it was exausting.
 
Your Dr. should have addressed this issue and if they have not call and get one.
 
Jim
*Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
*Referred to Urologist. Biopsy and bone scan in Oct 04.
*Pathology report in Nov 04. Initial Results are T2cNoMo carcinoma of prostate gland.
*Had a RPP on 14 Feb 2005. Boy talk about irony look at that date again.
*Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
*"I wish to apologize because I misdiagnosed your condition. Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
*At that moment I fell in love with my Dr. and have never changed my mind.
*Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
*All PSA checkups to date, 5 1/2 yrs, are undetectable.

Jazzman1
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Date Joined Sep 2010
Total Posts : 1160
   Posted 9/19/2010 4:22 PM (GMT -6)   
Goodlife,

I'm looking for an experienced Da Vinci surgeon at the Cleveland Clinic. Do you have any recommendations for me?

Jonathan

DJBearGuy
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Date Joined Dec 2008
Total Posts : 732
   Posted 9/19/2010 7:46 PM (GMT -6)   
Mr. Bill,

When I had the cath in, I walked a lot in the house. Bedroom to kitchen and back, thirty, forty, fifty times or more. Strangely, this was not as boring as it sounds. Must have been that post-surgery state of mind, but it was actually fun. Maybe that would work for you. Catheter taken out, but then had to be put back in. By then I was ready to go out in the world, drive, go shopping, with the leg bag. Had to walk much slower than usual at first, but that's to be expected.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09, Oct 2009, Nov 09, Feb 10, June 10 still undetectable (<0.01)!

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/19/2010 7:48 PM (GMT -6)   
Jazzman,

I sent you an e-mail

Goodlife
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
15 month PSA <.01

TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/19/2010 9:24 PM (GMT -6)   
Mr Bill,
 
Glad the cath is out and you are on the other side. My husband had his Robotic surgery on 8/26. 3 weeks now and slowly but surely his energy is returning. He goes out for a few hours at a time driving to a local diner to meet his friends for lunch. Today, he actually went to watch the softball team he manages play a double header. I understand he actually caught an outfield ball. No bat swinging yet though!
 
Tonight we went to a wedding and we had one delicious slow dance. He has feeling when he is going to pee and so can get to a bathroom but does drip lots the more active he is. Kegeling is second nature already.
 
Take it slow. Heal at your own pace. But, keep in mind activity breeds activity. It replenishes your sense of balance and lust for life. One day at a time, we will both be facing the next PSA and will have decisions to make. M's path was not fabulous. We know what could be ahead. But, sitting around the house will only make it worse.
Best of luck and we are looking forward to hearing and sharing more.
Judy
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/19/2010 9:33 PM (GMT -6)   
Welcome and good luck to you, Mr. Bill. Your recovery so far, sounds pretty typical, if there is such a thing. You have been given a lot of good advice already. All I will add, is learn to listen to your body while in the recovery side of things. Just don't over do any one thing. Keagels are great, but not if you over do them. particularly late in the day when you are tired and your muscles are tired. If you need rest, then rest. Walking is great too, in moderation.

I hope you continue to do well, and please keep us up to date with your progress.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 688
   Posted 9/20/2010 6:38 AM (GMT -6)   
Jonathan,
My surgeon at clinic was Dr. Andrew Stephenson. If you go to www.clevelandclinic.org you can look him up in find a doctor.

English Alf
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Date Joined Oct 2009
Total Posts : 2215
   Posted 9/20/2010 7:01 AM (GMT -6)   
Just a quick one to mention an important point for those just out of surgery who are thinking about what's in store in the coming days and weeks. Do not do Kegels while the catheter is in place!
Alf

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 688
   Posted 9/20/2010 5:33 PM (GMT -6)   
How often are you folks doing Keagles? I was told 4 or 5 times a day 10 reps. Does that sound right?
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