This side of the bridge

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Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 9/29/2008 6:36 PM (GMT -6)   
Have scheduled robotic prostatectomy for Xmas week, so a ways off.  My category is almost watchful waiting, but just a bit over the line.  Wife and I have increased our lovemaking, which has some bittersweet overtones offset by perhaps increased awareness of caring for each other.  I have been testosterone deficient for a long time, made it up with DHEA tablets (found it to be smoother and more reliable than monthly testosterone shots) and with this news I have backed off, but this has lead to some loss of libido and performance.  In some ways, we are perhaps practicing for the post experience. (Question:  What is the risk of maintaining normal or even slightly subnormal testosterone levels before and after prostatectomy?).
 
I don't know about others, but I did not find biopsies (2) to be benign.  I experienced prostatitis (painful to sit) for a couple of months, difficult to drive and flying scared the *hit out of me.  It declined with time, but I feel that there is some residual change even months afterwards.
 
I guess I'm looking for tips for crossing the bridge, both short term and long term.  A friend was just in the hospital, and recommended earplugs (or an iPod) and an eyecover for sleeping.  So that's easy, but the stay is short.  What about dealing with the catheter?  Can you walk comfortably?  Is it best to cinch it down, with tape or velcro?  The full bladder feeling, short term or as long as it is in? Is returning to work (light duty, desk work) after two weeks a reasonable expectation?  If you regain continence, is it complete in the sense that I'll be able to go get a load of firewood without peeing my pants?
 
And down the road.  With the robotic procedure, how many really have a sexual life that is similar to 'before', or is it largely as I saw here that "90% get erections" is false advertising when your love life may be 5% of what it was?

------------------------
The past is gone, the future yet to come.
This moment, here and now, is nothing less than the totality of existence.
 
Mild DRE finding (hindsight unrelated) > biopsy
3/08 1st biopsy, 18 core. Path 1, HPIN and ASAP, 0.5mm 1 core.  Path 2, carcinoma
7/08 2nd biopsy, 16 core.  Path 1, 1 core carcinoma.  Path 3, 3 cores carcinoma
Urologist retired.  Referred to another Dr. in same practice, not experienced enough.
Robotic da Vinci sched 12/22/08, Univ of Washington Med Center, Dr. Ellis.


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 9/29/2008 11:14 PM (GMT -6)   
Hello from the other side of the bridge!
 
I was totally shocked when the doctor told me Prostate Cancer..... I too had a case of on again /off again prostatitis for 4 1/2 years after hernia surgery. They thought my PSA rising was just infection caused.
 
Had a biospy to be be "sure". It was in 4 out of 20 samples.
 
I decided on daVinci surgery at UCSF Medical Center in San Francisco. I never had to go on nerve meds but I was very "down". about a month after my diagnosis my mother unexpectedly passed away. This didn't help suddenly having things to take care of 2/3 the way across the country from here.
 
I was always wanting sex. After diagnosis and the depression setting in, I lost interest. Then I felt I should "make hay while the sun shone". I did some but not nearly like before.
 
I had surgery in the afternoon on July 24, 2008. I was in the hospital 2 days. On the second morning I woke up to a partial erection on the catheter. So I knew I wasn't totally "broke"!!!!
 
I have gotten along very well. My life is about back to normal already. I can get erections without Viagra although I have it to help and I am supposed to use it several times a week for increasing bloodflow.
 
I rarely leak anymore and what I do is very minimal. I still wear pads when I am gone from home just in case. There are times when laughing causes a slight problem.
 
What to do before surgery? Study up on this as much as you can. The knowledge will come in handy. You will not panic if you know this or that might happen, etc.
 
I dreaded having a catheter. That was wasted worrying. Sure it was wasn't a great thing but it was very liveable. I used the bedside bag in the late evening and night. I used the leg bag in the morning after my shower.
 
I went to church and numerous public functions and never had any problems at all. Things didn't "show" through my pants and the leg bag worked great. One tip: Take extremely loose pants to the hospital to wear home.... I was swelled up from the surgery and then the catheter and leg bag on top of it. I had taken my favorite pair of Docker Pants. Normally they fit just fairly loose and they were really tight..... And I had to use the bus to the train, train for an hour, then ride on in the car for another hour. Other than unbuttoning my pants and letting my belt cover the unbuttoned area, the entire trip was uneventful.
 
I never used anything extra to help tie down the catheter or the leg bag. I was given several catheter clamps that adhered to my legs that held the catheter. The built in velcro straps on the leg bag held securely. I could walk OK. The "full" feeling came and went on me. Some times I could get that to go away by very gently wiggling the catheter.
 
Another tip: You will be told to bring a pad to wear after the catheter is removed. I looked at my "mart" pharmacy, my supermarket pharmacy, and my local drugstore for male incontinence pads. Basically all I could find was a bulky looking type that kind of goes from the front to way underneath. I did find online and at a drug store with Aid in their name that they carried a brand that is triangular and just fit in the front of a pair of brief type underwear. That has really helped. Other than being a bit warm, they have not been bulky or hard to live with.
My doctor was not a big fan of me returning to work quickly so I have been off 2 months and will return shortly. I am fortunate to have a job that will allow this time off and he felt I could recover better long term this way.
 
I am now nine weeks out and can basically get along without any pads. I usually only have problems late in the day when I am getting tired. I have had maybe two or three drops when I laugh or when I have gotten up out of a chair. I was not allowed to lift anything heavier than a gallon of milk for over six weeks. Only lately have I been lifting and so far have had no leakage with that.
 
My wife feels that sex life is actually improved. I know I do not have any problems especially if I use Viagra. It may take a bit more to get aroused without Viagra but other than that, no big deal. Something that is mental is I do miss ejaculating. I really am beginning to believe it is nicer not, but even though I had great orgasms, It was just different with nothing visible happening.
 
Besure you have a doctor who is experienced in using the robot. Experience really does play a part on future erections unless there is cancer near the nerve bundles. I am very glad I choose a hospital and surgeon who has done this several times a week for a number of years. Your doctor sounds great on the internet.
 
Let me know if I can help more.
 
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 9/30/2008 4:21 AM (GMT -6)   
Hi Gerbe, (and Califguy) and welcome to the forum.

I think we're all different in how we react. I had a 12-core biopsy and found the first needle to be very painful, and left me wondering how I would cope with the remainder. Fortunately, not so bad, but still not a pleasant experience -- I'm glad I don't have to go through that again! The after effects were minor: a little pink in the urine for the first day, blood in the semen for a month. Starting off bright red and turning brown over time.

Incidentally, for those wondering, there is no risk of your partner catching cancer, even if you turn out to have it.

But on to the catheter: I found no trouble walking with it in place, and had the tube taped to my right thigh the whole time. Occasionally felt it pinching a little where it entered the penis, but a little wriggling (in private!) eased that. Never had a feeling of bladder fullness.

I was one of the lucky ones -- back to near full continence immediately. I can get a load of firewood or cough, sneeze without any concern for leaks -- just as before surgery.

On the ED front, I have no natural erections. However injections work well, and if anything sex is better than before. I last a lot longer than before, and sometimes now don't orgasm -- but still, life is good.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week PSA: 0 


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 9/30/2008 6:43 AM (GMT -6)   
I found no trouble walking around. I did tape the catheter tube to my upper thigh. I found this useful at night especially when rolling around in bed. It kept it from tangling up and pulling on my valuables.

Interestingly, I think you will find the biopsy a far worse experience than the surgery. At least I did. I had very little pain at surgery, and was up and around in no time.

I did not see your age, but from everything I have read, if you are in your 40's or 50's you have a good prospect of returning to near normal sexually - especially if you have nerve sparing surgery. I am not so lucky because the doc cut a little wider with me, because of my biopsy. Time will tell how I will do - right now I am not fairing very well on that issue. But, I am very glad to be alive, and on this side of the bridge.

And as far as testosterone, I don't think you need to be too concerned because your biopsy (from what I could tell) is still in the early stages. Harmone theraphy to block testosterone is usually reserved for those in a more advanced state of cancer. Blessings.

RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/30/2008 7:08 AM (GMT -6)   
Welcome, sorry you had to come....lol Here's some links for prep. and after surgical care.

http://www.med.umich.edu/1libr/urology/postcare/rprostatectomy.htm

http://www.healingwell.com/community/default.aspx?f=35&m=52996 This link is to the second page resource guide, same as the second item from the top on the message page. There's detailed information from other members experiences for almost any subject that may arise.
James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-0, 6 mts.-0, 9 mts.-0.


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 9/30/2008 8:22 AM (GMT -6)   
I was well-prepared pre-op, because my Urologist (at Northwestern Memorial in Chicago) provided me with a huge packet of information detailing things pre and post-op, explanation of the surgery, catheter care, post-op issues, etc.  The hospital offered a pre-op workshop at which everthing was explained best it could be.  During my 1.5 day hospital stay it was required that I sit and watch (from my bed) a video explaining how to deal with the catheter, it's cleaning and care, securing, etc.  Just prior to discharge my nurse worked with me and the take-home catheters (there were two different types - day/night) so I understood how to handle it.  The catheter was tethererd to my thigh by a velcro strip which the hospital provided - no need for tape.  The catheter presented no discomfort or problems and was removed 12-days post-op.
 
At Northwestern Memorial in Chicago all rooms are private rooms, and they are quiet.  Nurses were in/out during my first night, taking vitals, checking on incisions (the holes punched in the stomach/abdomen for da Vinci), checking on the IV and medications, etc. - but I was, for the most part - 'out of it' - and remember little of those events.  I was up and walking mid-day the day following surgery (didn't get to my room until about 1:30 a.m. following surgery, because of operating room delays ahead of me).  I was eating light meals right away.  I was discharged mid-Friday - following a late-day Wednesday surgery.
 
I live alone and the first several days at home would probably have been a little better had I asked for a visiting nurse to check on things a couple of times - but I handled the logistics and am no worse for the wear.  Showering, changing the catheter bags, etc. took some juggling, but I did it without incident.  I've had no post-op pains.  It was, though, not easy to sit for long in the chair when the catheter was in, but once the catheter was removed I've encountered no sitting problems or discomfort.
 
My work involves sitting at a desk/computer for 8-hous daily and I wondered how soon I could get back to that, so I returned yesterday - 18-days post-op, and everything went well.  Incontenence has been an issue, but an expected one.  I leak when I get up/sit down, when I'm walking sometimes, when I get in/out of bed.  At first, I was going through 10-pads a day.  Now I'm probably at 7 or 8.  I change often, though, because I don't like the wet feeling - or thinking I may be wet - and others may not change the pads quite as often.  The pads are inexpensive and easily disposable.  Thank God for those pads!  There's no leaking through to my slacks, though - so just I know why I'm rushing through the office making a bee-line for the bathroom!
 
At my age, I've enjoyed a good sex life thus far and removing the cancer is/was more important to me than what may happen to my sex life post-op.  I don't expect it to be the same, and if it is that's a bonus.  A longer, overall healthier life is what I'm looking for.
 
Pre-op I hardly thought about the surgery.  There was nothing I could do about it anyway.  I remember nothing about the surgery itself and the hospital stay was very short.  I've had no pains or real discomfort post-op.  I've approached this like I've approached lesser medical issues - found out about it and let the doctor's deal with it.  End of story (well, once the leaking stops it'll be the end of the story!).  I was so relaxed pre-op I went to Rio de Janeiro for a week just prior to surgery.
 
Comforting to me was reading through these types of discussions and searching the www for helpful information.  I knew what to expect, before it happened.  Fear of the unknown often causes great stress.  Take the time to read through the materials your doctor/hospital will give you (ask for those things now if you haven't received a packet) and post-op listen to your body and let it make some of the "when" decisions for you.
 
Best wishes for a successful surgery and complete recovery.  Relax best you can.
 
Mavica
 
 
 
 

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (19 days post-op)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

 


Gerbe
Regular Member


Date Joined Sep 2008
Total Posts : 42
   Posted 9/30/2008 5:59 PM (GMT -6)   
Thank you for all the replies. The short term advice (pads, prepping, first feelings) is much appreciated. The longer outlook, hearing more about realistic expectations for quality of life assessments after some time has passed would help. My expectation is a dip at the 'bridge', some paying attention to issues in the first 1 to 6 months, and then stabilization at my new 'place' in life. I expect to be able to pee like a racehorse, hold my urine 99% of the time but leak at extreme stress and love my wife but with more stimulation and patience. The quality of the 'orgasmic event' will change, but with a good surgeon (who hopefully I have selected) it will be different but satisfying, with only a gentle nostalgia for what was once.

Life, awareness, being, experiencing, sensing, learning, these are a few of my favorite things. I will accept much for longevity, and it doesn't seem like the price here is near as high as others less fortunate must pay.
The past is gone, the future yet to come.
This moment, here and now, is nothing less than the totality of existence.
 
Age 58
Mild DRE finding (hindsight unrelated) > biopsy
3/08 1st biopsy, 18 core. Path 1, HPIN and ASAP, 0.5mm 1 core.  Path 2, carcinoma
7/08 2nd biopsy, 16 core.  Path 1, 1 core carcinoma.  Path 3, 3 cores carcinoma
Urologist retired.  Referred to another Dr. in same practice, not experienced enough.
Robotic da Vinci sched 12/22/08, Univ of Washington Med Center, Dr. Ellis.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/30/2008 8:00 PM (GMT -6)   
Gerbe, sounds like you have got the routine down pat. That's about the norm for most of us here, so there shouldn't be any big surprises for you. I remember my biggest surprise during it all was how lousy I felt on the 4th day, and how much better I felt a week later. It's been a steady climb back to normalacy for me, all that remains after a year is getting some response other than none on the ed front and maintaining those zero's. rolleyes
James C.
Co-Moderator- Prostate Cancer Forum
Help support the Forum so it can continue helping you- donate at www.healingwell.com/donate
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-0, 6 mts.-0, 9 mts.-0.

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