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Total Incontinence After Prostatectomy

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Posted 11/30/2005 5:55 PM (GMT 0)
Dear Philpa,
My research turned up comparative descriptions of RLP and traditional open surgery from credible sources (major nationally visible surgery and research centers).
The main and critical differences in my view are impressive. Robotic laparascopic generates far less blood loss and far less blood for the surgical team to deal with to maintain clear visibility during the procedure. The RL procedure also involves
a highly mobile camera and lighting that can magnify what’s happening (e.g. cutting
and stitching) by a factor of 16. And also, robotic is said to involve little or no tremor that is a natural part, even if very little, of surgery by hand. To me, the image of a surgeon seeing exactly what he/she is doing up close and proceeding on his/her own
pace with steady instruments to get the job done right, e.g. cutting exactly around nerves and stitching the key urethra-bladder hook-up, is very assuring. The main reply of traditional surgeons is that they like to work by real “feel,” which I am sure is true. Find a doc in any case who has done hundreds of procedures, whatever the technique. Reliable seeming outcome statistics are different too. With RLP, the nuisance-causing catheter stays in typically one week. With traditional surgery, 2 weeks or more is common. And average times to restored continence and sexual function are about half with RLP. Of course results vary by individual. These are the key differences as I see them.
James (UCLA Professor).
Posted 11/30/2005 8:15 PM (GMT 0)
Just got my diagnosis yesterday and beginning my research. Everything I've read on RRP looks promising. BUT...How do a find an experienced surgeon in my area (Portsmouth NH)? Willing to travel to MA if necessary...

~ Greg ~
Posted 11/30/2005 9:19 PM (GMT 0)

Greg hi!

Portsmouth, NH - no way! Dare I mention the cliché about how small of a world this is!

Here's our plan of attack - Diagnostics at Mass General in Boston. Dana Farber Institute is good too, but we already have a history with Mass General. Then when the time comes I feel strongly about going to the best possible surgeon. From everything I've read, top hospital in the nation is John Hopkins in Baltimore, MD. They are the guys that developed the "Partin Tables". It's about an 8 hour ride from where you are, and they seem really set up for clients from "away".

Check this out: http://urology.jhu.edu/prostate/faculty1.php

So what if we end up spending say 5,000 more for travel and lodging compared to staying local? That's what home equity loans are for!

If surgery is an option, I too have come to the conclusion that robotic is the best way to go. 

Posted 11/30/2005 10:31 PM (GMT 0)

Dear James in LA,

Thank you for your post. It confirms my recent tentative conclusion based on some links Kay sent me, and based on what I read. Thank you for stipulating, point by point, why the robotic surgery is the better way to go. I agree.

The next step is to find the best place to go, and committing to whatever it takes to be treated there. Even if it means taking out a second mortgage.

Posted 12/1/2005 6:33 AM (GMT 0)
Stephanie B....If you're looking at Johns Hopkins, what do you need done at Mass General? How long would you plan on staying in Baltimore area for follow-up? Are you guys in Portsmouth? I'm actually in York ME, but figured nobody would know where that was...When was the diagnosis? Have you come across any info about Leahy Clinic in Burlington MA by any chance?

~ Greg ~
Posted 12/1/2005 4:17 PM (GMT 0)

Hi All,

 

I just found this chat group and very much appreciate the dialogue I have read.  I was diagnosed with prostate cancer a few weeks ago.  I'm 41 years old. Found an enlarged prostate and seminal vesicles on CAT scan. PSA came out 2.71 and repeat 2.81. First biopsy indicated atypical cells, second biopsy confirmed cancerous cells in one focus. Gleason 7 (3 + 4).  Just like others, I have been trying to figure out which form of surgery I should undergo- very confusing.  Each surgeon tells you his way is the best. 

I am based on the NY-NJ Border.  Any recommendations for excellent surgeons? Does anyone have an opinions about Dr Herbert Lepor at NYU (New York University Medical Center) ?

 

Thank you all,

And good luck

Howard

Posted 12/1/2005 6:45 PM (GMT 0)
Howard...Oh My God...I thought I was the baby in this group at 56...and you're here at 41? I find it hard to believe a urologist would recommend surgery at your age with those numbers....My PSA was 4.6 six years ago and my biopsy then was probably similar to yours....I went into a "Watchful Waiting" mode with PSA's every 6 months...My last one shot up to 10, so I had the 2nd biopsy and am now exploring the surgical options...BUT...IN THE MEANTIME...I had six great years of sex (and continence) before getting to this point...You may have a strain that develops extremely slowly and may have 5 or 10 years before surgery is essential...I would definitely suggest a 2nd and 3rd opinion...Keeping in mind that your urologist has a vested interest in operating on you...GOOD LUCK BRO!
Posted 12/1/2005 9:18 PM (GMT 0)

Hi Greg,

Have you ever come across this link? It's a ranking of the nation's hospitals, and this page is specifically for Urology.

http://www.usnews.com/usnews/health/best-hospitals/rankings/specihqurol.htm

I would say that the hospital/surgeon you chose depends on the treatment they are telling you, you need. For the Robotic Laparascopic prostatectomy for instance, I found nothing at Mass General, but I did find it at Boston Medical Centre.

Is there an e-mail address (Yahoo or sthing like that) that I can write to? I feel a bit funny writing too much here. I'm trying hard to respect my husband's wishes of privacy.

Stephanie

Posted 12/2/2005 5:16 AM (GMT 0)
Stephanie_B,

Thank you for that link...I was happy to see Lahey Clinic in the Top 20...I plan to check them out...I was surprised not to see Dana Farber...Maybe they don't do Urology?

Please feel free to email me at [email protected]

I look forward to sharing as much info as possible...

Greg T.
Posted 12/6/2005 4:58 AM (GMT 0)

Hi Howard,

My husband was 43 when he was diagnosed with prostate cancer. PSA was 6.55 and gleason was 3+3=6.  He had the Da Vinci Robotic surgery, on Aug.22nd. It seems that a lot of men are being diagnosed younger now.  I was also told that the younger you are when diagnosed the chances of having a more aggressive form of cancer is higher.  When you are older and diagnosed, the cancer tends to be the slower growing and not as aggressive.  The gleason scores tells you the type of cells. I was told of a gentlmen that was diagnosed with cancer, and the Dr. did  watchful waiting. By the time he went back in, his PSA went up and the cancer had spread to his bones.  So if you are going to do the watchful waiting, you really want to make sure that your doctor follows you very closely.  The City of Hope monitors their patients every 3 months on the PSA for the first year after surgery. Then they suggest a PSA every 6 months for the rest of your life.

To us the Da Vinci robotic surgery was a good choice for us.  You have to do your research and ask lots and lots of questions when you do go to the doctor.  You want to make sure of the doctors expertise on whatever type of surgery he does. There is a difference in the recovery time with the open surgeries and the robotic or laproscopic surgeries.   Also want to make sure they do the "Nerve Sparing" prostatectomy.

Good Luck,

Kay

Posted 12/6/2005 6:56 PM (GMT 0)
Philpa,
As james in Los Angeles stated, you really do need a pro to go over this with you. University hospitals and teaching hospitals seem to be better at this.
Gleason scores and and stages may limit some choices as well as your husbands age.
I did considerable research into cancer centers and doctors before deciding where to go.
I am 61 and because my gleason scores were 6 (3+3)and 7 (4+3) surgery or radiation were my options.
Each has its advantages and disadvantages.
I had a team of doctors where I went so I had confidence that they were not competing for my business but had my welfare in mind.
I had my surgery on 11-15-2005 and am very pleased with my doctors.

Maybe if you mentioned where you live others here could give suggestions on where best to go.
Good Luck, Kirk
Posted 12/10/2005 2:55 AM (GMT 0)
Hi, Howard,

My advice to you is slow down a little bit and learn all you can about PC before taking any action. Your Gleason score is a little high but a PSA of 2.71? I can't even believe you were biopsied with such a low PSA except for the fact of your enlarged prostate, perhaps.

Anyway, my PSA was 7.5, and I was biopsied in April of 2001. I opted right away for regular surgery, then started reading like crazy AND attending a local support group. It was there that I learned all the horrors of surgery and radiation, and there are a lot of them. Remember, quality of life should be as important as quantity. I would rather die a bit younger after having a very active sex life and not having to wear Depends for incontinence (radical) or bowel problems (radiation). There are many who have these problems who are still facing prostate cancer. Their PSAs are rising again despite not having a prostate gland.

However, it is important for each of us to reach his own decision and not be swayed by anyone else, including doctors who, you must remember, make the most money from these treatments. I totally changed my diet, cutting out red meat, most dietary fat, and dairy. I eat a lot of fish, fresh fruits and veggies, get more exercise, and I feel great, up above and down below. My PSA has gradually risen over the years and I am now at a point of looking at the present options....which are better than they were four years ago. So, each day that we get closer to resolving our cancer problems without destroying our lives is a day worth waiting for. My advice is do not rush into anything. Wait six months and see how much your PSA has changed. For now, eat right and get more exercise. Good luck. By the way, I am 64.
C
Posted 12/10/2005 4:01 AM (GMT 0)
Dear Stephanie B,

Robotic appears to allow the surgeon to move at his/her own pace, with magnified
and relatively clear vision, to execute everything that needs doing. This would include
stable pauses to size up where to snip, stitch next. I don't know how regular laparoscopic surgery
compares -- probably not quite as stable or precise. Of course the skill of the surgeon
is paramount. I really have not seen or heard of docs doing non-robotic laparoscopic routines,
but then I've only checked out the likes of UCLA (where I had my surgery), Johns Hopkins,
City of Hope, and Cedars Sinai). It seemed in my search that the main choices are
traditional surgery and robotic. Just a note on laparascopic surgery, I'm sure you know.
The procedure is much less invasive than traditional surgery, things heal faster, you go
home sooner, the catheter stays in shorter period of time, and continence and sexual
function recover faster -- all the things you want to hear. I would seek robotic with an
experienced doc. james
Posted 12/17/2005 7:29 PM (GMT 0)
What has been the insurance coverage for those of you having/considering robotic prostate surgery? I've Blue Cross/Blue Shield as primary insurance, with Tricare as secondary.

Thanx.

(whoops. should have started a new thread. Oh well, see what happens using this one....)

Post Edited (jg) : 12/17/2005 12:33:20 PM (GMT-7)

Posted 12/24/2005 11:41 PM (GMT 0)
Hi
On 5/30/05 I had robotic/laparascopic prostatectomy, at Henery Ford with an amazingly quick and painless recovery from surgery itself (67) However, from the time the catheter was removed for four months I've had total incontinence--not a bit of control. After the fourth month I quit doing Kegals, I did so many exercises I thought I had hemorrhoids, about the fifth month I started to see some small signs of improvement about that time I got a ED Vac system from Medicare and tried Celis things started to come together . I am about six months and still need about 6 pads per day.The major problem I have now is stress, lifting laughing ect. My local Dr. says if no improvement in 12 months we will consider other options. He said my sphincter is weak and it will need more time but don’t worry . I thought I was the only one like this its good to talk.
Happy Holidays to All
Paul 305-246-3376
Posted 12/28/2005 5:02 PM (GMT 0)
So glad I came across this website...My husband was diagnosed right before Christmas... he is 57 and other than high blood pressure and arthritis aches and pains he is in good health. Our Dr. is in the Greater Cincinnati area and is recommending the Robotic laproscopy prostectomy. He belongs to a large group practice where each Dr. specializes in the various treatments....Our Dr. does the Robotic Laproscopic.. but after looking at some web sites....I have not seen our area Hospital that has the da vinci robot listed with a rating..... has anyone in here had this done in Cincy? My husbands biggest fear is being incontinent ... he is a pharmacist and is on his feet all day .... After reading all the messages it sounds like this is more of a problem than the Doctor stated. We go see the Dr. tomorrow to give him our decision on our chosen procedure...whether we opt for the seeds or surgery....

thanks
suz
Posted 12/29/2005 9:54 PM (GMT 0)

Suz - Since you are in Cincinnati, I would suggest checking out Dr. Vipul Patel at The Ohio State University James Cancer Hospital in Columbus. He has performed more than 800 robotic prostatectomies, which is the second highest number of anyone in the world. He is a very skilled and sensitive surgeon. He performed my surgery in September (I am 54). I returned to work after two weeks and resumed significant work-related travel after four weeks. Incontinence has not been an issue. Here is the web-site for robotic prostatectomy at Ohio State with a link to Dr. Patel's information: http://www.jamesline.com/cancertypes/prostate/services/robotic_prostatectomy/

Good luck to your husband and you. In hindsight, I am amazed how quickly and easily I was able to get this problem taken care of. I hope your husband will have the same result.

Posted 1/7/2006 3:04 AM (GMT 0)
I just noted that my last post was 9/26/05, I was at full flow , no control, and unable to hold any fluid in my bladder , that was 4 month after the operation. At that time I made some changes to my recovery effort ,( 1 stopped all Kegal’s , 2.started a Vacuum therapy 3 tried 20 mg Cialis) and the last two months I have made great progress, some days 2 or 3 pads. I have now started doing kegal again . My major problem at this time is stress, lifting, climbing ect. I think many Dr. over state there IC and ED time rates, If you look at study’s from the VA it show a different story.
Posted 1/7/2006 7:01 PM (GMT 0)
I found that to be true also, IC ED recovery is overstated, they don't want to scare you away.
Posted 3/14/2006 7:19 AM (GMT 0)
After 3 months of discouraging total incontinence following RLP, I began taking 30 mg of Cymbalta (duloxetine) in early February. (Google it!) In the past month I've seen very good progress -- cut the number of pads in half, and find myself occasionally holding things in successfully when walking and not thinking about it. I thought others in the incontenent zone would like a progress story. James in Los Angeles
Posted 4/19/2006 5:08 PM (GMT 0)
I am 56 and also had a robotic laparoscopic prostatectomy 03/29/06 with little pain and catheter removal 14 days later.  At 7 days after catheter removal (21 days after surgery) I'm wearing diapers all day.  I am retaining some urine in my bladder and can go to the toilet and urinate periodically but I also am leaking pretty much constantly, less at night while I am reclining or when sitting.  I wish I had known to do Kegel exercises before the surgery but I had been under the impression they were for afterwards so I do them now.  I plan on going back to work in a week and dread having to manage this problem away from home.  I'll be interested in following your progress and will keep you posted on mine.

Posted 4/20/2006 6:18 PM (GMT 0)

CharleyC

I just had my catheter removed on Tuesday, two days ago. I am probably 98% continent due to the care of my Dr. He had always said that he would have me continent in 7 days after catheter removal. He appears to be a specialist in this area.  By the way, I am 59 with all of the preop biopsies positive. Removed the prostate & seminal vessicles.  All nodes & bladder neg.

Let me pass on to you his method.  He says that it is hard for patients to isolate the muscles for control.  Take all clothes off below the waste, get a stirophome cup (coffee cup) & hold it under your penis. Walk around the garage or house for 2 hrs/day total. Do the walking at three separate times during the day.  Does not want any drops in the cup.  You will not believe how quick you can isolate the muscles with this method.  It took me about one day to figure it out. By the way, do not take a leak right before you start walking.  A full bladder will get you there quicker.

Hope this helps...

Stan

Posted 4/20/2006 8:40 PM (GMT 0)
Stan,

That is a first! If it works then great. Necessity is the master of invention. Who was your Doc? Interesting information that I plan on passing along.  I assume this retraining method is post, not pre-op?

Congrats are in order too! heal-well, Swim

Posted 4/20/2006 9:03 PM (GMT 0)
Dr Satish Karnik in Austin, Tx.

Posted 4/21/2006 12:28 AM (GMT 0)
Argylegolf,

You mentioned that your doctor was going to do exercises and some kind of a massage technique has he done that and if so what was it. Also you never said what your gleason scores were, do you know? Just wondering how aggressive your condition was or was not with all your biopsys being positive.

Thankyou.
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