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My Robotic Prostatectomy Experience

whubbs
Posts: 77
Joined: Sep 2008

I was diagnosed back in Aug with PCa, I'm 41, healthy, Gleason score of 3+3 and 3 of 12 biopsy cores positive.
I made the decision to go with the robotic prostatectomy, mainly due to the positive outcomes of rapid return erectile function and incontinence improvements being touted by most robotic surgeons, as well as the positive Oncological results mainly being expected in cases of early detection and organ confined.
The surgeon I selected was Dr. Ash Tewari at NY Presbyterian Hospital.
His specialty is in robotic prostatectomies, and he practices his own pioneered methods of nerve sparing techniques.
It is now 2 weeks after my surgery, I have lingering continence issues, which are easily and discreetly dealt with.
Erectile function has returned in part with the help of Levitra after only a week and a half, which is a remarkable outcome if you ask me!
Each day I see improvement in each aspect.
I am back to work (desk job), however on limited time as I do remain a bit tired and incision areas are right on the belt line, which doesnt bode well with some pants.
I have to say, the worst part of the entire experience was the 3T transrectal MRI, the biopsy and the catheter.
Finding the energy to get up out of the bed in the hospital and walk, with the annoying catheter in was horrible. Otherwise, pain was not too bad once it was controlled.
One thing I would suggest to anyone going for the robotic method, is to WALK as soon as you can. In Dr. Tewari's case, he wanted me up within hrs of the surgery.
At the time I had thought it crazy, but the longer I laid there, the worse the gas pains got. It got to a point where I wasn't getting up because I was weak from not eating and the gas pains were so bad. Walking is absolutely needed to relieve this pain.
I regret that I didn't get up and fight through the gas pain. It lingered for days and set me back.
One thing to keep in mind regarding prostatectomy, is that it can not be performed if you do radiation first. Once you do radiation (seeds for example), I was told you can not do any surgical method. It was always suggested to me that seeding be a secondary method unless you are older.
I welcome any questions from anyone who is considering a robotic prostatectomy, you can email me at cobrabite427@yahoo.com (please make subject 'prostatectomy')
I certainly recommend Dr. Tewari, he is an outstanding surgeon, whose priorities are in Oncology, Erectile function and continency return in the method of his own pioneered nerve sparing techniques.
I will continue to post to this thread on my outcome, but I am very pleased so far.
Good luck to everyone with the method you chose. Be sure to educate yourself as much as you can, and make the decision with all the questions answered.
-Wayne

whubbs
Posts: 77
Joined: Sep 2008

Hello everyone!

I've recieved many emails from men all around the world since I posted my experience with robotic prostatectomy treatment.

It is now 5 years since my treatment and I wanted to drop a line to give some insight into 'life after davinci'..

My PSA still remains 0.0 !! LaughingYay! It remains a concern, every 6 months or so when I get blood work done, my stomach ties up in knots worrying about metasized cancer - which scares the crap out of me. So far so good. (knocking on my head and wood)

I'm now 46 and ED issues are minimal - my brain just needs to be engaged. I now understand what its like for women! Not such a bad thing really. I do very occassionally deal with an issue there, but 90% of the time everything is great. Nothing a blue pill can't help on the 3 or 4 occasions per year they happen - not bad if you ask me.

Incontinence is not an issue, however I do experience a drop here and there, full bladder and exerting myself certain ways, coughing, sneezing, etc. might create a drop.  I think this is very common and really not an issue in the grand scheme of things.

Living with issues like these rather than living with the 'wait and see' possibility of an invisible cancer spreading outside the prostate is a no brainer. (I do find it odd reading posts from men who mock those who decide to get treatment - we all have a comfort zone, personally I couldn't wait to get it out of me and don't regret that decision for 1 minute - I'd hope that others could respect that personal decision)

Again, my recommendations to anyone considering a robotic prostatectomy are:

  • Find the BEST. I went with Ash Tewari, there are many others. Ask how many they do, what percentage result in incontiency and ED, oncological results, etc. If they can't tell you this - beware. They all should be tracking that and tying in with their patients years down to the road. A note on Tewari - I understand he is moving his practice to Mt. Sinai - I am not sure if he will continue his prostatectomy practice - however he has trained many surgeons at prebysterian in NYC and I am sure they remain cutting edge. Samadhi is also another great surgeon.

 

  • Ask if they are aware of and utilize nerve sparring techniques. They should. If not, heads up - a good surgeon with a davinci robot can leave you pissing yourself and playing pool with rope the rest of your life. Nerve sparring AND oncological results should be BOTH on the top of their priority list.  Don't be afraid of getting 2nd and 3rd opinions.  Once I shook Tewari's hand I knew he was the right surgeon for me. When I discussed with current urologist (Dr. Hesse in New Haven CT) at the time - he pushed the fact that there were countless ED treatments, that freaked me out and I cancelled his surgery - he then dropped me as a patient and told me not to return. Glad I made that move!

 

  • Do the kegel exercises! You'll thank me later. If I had done mine, I'd likely not be dealing with that drop I mentioned.

 

  • Remember blood flow to that area is important. Have regular relations before and after surgery - utilize ED meds to improve blood flow - this will benefit you greatly.

 

  • Get off the couch! Walk, exercise, get in better shape. This will make recovery easier and will benefit you all over.

Feel free to contact me if you have any questions - especially the sensitive stuff you can't ask your doctor. I've heard it all (probably close to 500 emails since 2008 surgery) and I'll give you the straight on all those intimate concerns you have.

cobrabite427@yahoo.com

Take care everyone and best of luck!

-Wayne

Beau2
Posts: 241
Joined: Sep 2010

Wayne,

Great report! 

I am sure that your write up on things to consider will be very helpful to guys just starting down the PCa path.

Since your new note was in the middle of the thread I had a hard time finding it. While i was looking for it, I did enjoy looking at all of the postings from guys who had not been on the site for a while .... Old home week!

Here's the best wishes for a similar report in year 10!

 

lion1
Posts: 240
Joined: May 2007

I had an LRP wtih Dr Krongrad in Miami,FL.

swsiebert
Posts: 3
Joined: Jun 2009

Gkoper,
check out Dr Vipul Patel in Celebration, he has performed more than any other doctor on earth, over 3,000 and wrote the text most others study from. celebration is only about an hour from ocala, i am going there this week from boca to get mine done...

I am 48 yrs old with a PSA of 19.1, a gleason of 4+4 (8) and i have no other choice, my urologist here in boca helped me find the best and he's just an hour from you

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Thanks for suggestion. But I had my Davinchi done by Edward King in Ocala. I am about 6 weeks post-op and doing very well. Sounds like you have a top-notch surgeon...all the best.
George

user1
Posts: 4
Joined: Jul 2009

Another alternative to surgery is HIFU....High Intensity Focused Ultrasound. The data I saw online suggested the trials in the US are providing equal if not better results than surgery/radiation. I think the website is www.internationalhifu.com

whubbs
Posts: 77
Joined: Sep 2008

I'm now 9 months outside of my robotic surgery.
PSA tests came back yesterday.. PSA remains still <.1 :)
100 % Continent (a little drip shutting off the valve, but is improving to 100% soon - Do your KEGELS!)
Other issue- Not a problem, maybe not 100% but by next appointment (1 year) I'm feeling that it will be.
Good luck to everyone dealing with this.
Feel free to email me @ cobrabite427@yahoo.com if you want to know any details on the robotic surgery, Ash Tewari (the best robotic surgeon in the Notheast!), side effects, pre and post surgery issues and suggestions/advice, etc.

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

I am at 3 monhs. You have increased my hope to become fully continent again! I never thought I could become pad dependent". I need to increase my Kegels or at least not forget to do them religiously. My PSAalso remains <0.1

TucNav
Posts: 8
Joined: Aug 2009

After surgery, what do you mean by leaking? Is it a dribble or a stream? Trying to prepare and just wanted to know. I looking at the Robo method as I just think it will be more precise. Thanks for the update posts...lots of good info.

whubbs
Posts: 77
Joined: Sep 2008

Leaking for some can be a significant dribble which will wet a pad quickly.
The leaks most of us are experiencing months / years later are drips.

whubbs
Posts: 77
Joined: Sep 2008

Leaking for some can be a significant dribble which will wet a pad quickly.
The leaks most of us are experiencing months / years later are drips.

brookjax's picture
brookjax
Posts: 18
Joined: Apr 2009

The two doctors I know both recommended Cialis. Do you think this was just a matter of 'playing it safe,' or is it experimentation as far as trying the three alternatives? Maybe the insurance covers Cialis but not the others?

kkauppi
Posts: 3
Joined: Oct 2009

Thanks Whoops for your continuing updates. I have had incontinence issues which are more troublesome to me than the cancer issue. I have not started any cancer treatment yet but I have cancelled my appointments for 1) proton radiation at Loma Linda in California and 2) brachytherapy locally. I'm not sure what to do or not do.
However, I have to thank you for your observations. I do not believe in prayer. Sorry. And I do not believe in god. Sorry again. I do trust the observations of people such as yourself who, I hope, have helped hundreds, maybe even thousands of people like myself.
You are a great unknown fried.

whubbs
Posts: 77
Joined: Sep 2008

Hello everyone :)
I'm sorry for not posting up for a while, you'll realize after treatment, you tend to move on.
However, for those who would like to contact me regarding my experience, have any questions, especially of the sensitive nature, feel free to email me at cobrabite427@yahoo.com (just make the subject prostatectomy, as I do get a lot of spam)

At 1 year, here's where I am;

Oncological- At 9 months PSA is still ND (non-detectable) - Next week is my 1 yr PSA check. Fingers crossed. (This is an anxiety I may never be able to escape from)

Continency- A drip here and there when I cough, sneeze, laugh or strain. Doc says a 'reaming' of the surgical site may help. I chose to wait and see. Not exactly something I consider a problem right now. Otherwise, I consider myself 'continent' - just have a slight leakage issue that is easily remedied by a tissue. Life goes on.

Erectile function- It's all back, in varying degrees of 'fulfillment'. For the first time in my life, my brain needs to be engaged, once it is there is no problem.
Of course, the little blue pill works wonders, but not needed.
A word to the naysayers- Take the ED pills before, during and after surgery- the improved blood flow helps healing. Thank me later.

Good luck to everyone. I'll report my PSA next week.
Hope to hear from anyone who needs to talk.
I've heard from hundreds of men during this year, and it's been very rewarding to me to help.
Sometimes, just knowng what will transpire during surgery helps the anxiety.

Special thanks to Dr. Ash Tewari - Easily the best at robotic prostatectomy, and continues to research less invasion methods, including a catheterless procedure. (One I was not eligible for unfortunately)
I see the great Doctor Tewari next week for perhaps the last time.
If you can, make him a part of your treatment options. His practice is remarkable.

Peace and health to all!

NM
Posts: 214
Joined: Jul 2009

Thats the date of my davinci of this year. Please continue posting as I still need to see what the future might hold and not get too discouraged. I know we are all different but your posts keep me and others optimistic about our future after Davinci.

Thanks again

Nick

whubbs
Posts: 77
Joined: Sep 2008

My one year appointment was met with the great news that my PSA is still <.1 (considered undetectable)!!!

The only thing Dr. Tewari suggests for me to help with a very minor issue is to have a procedure done to 'ream' out the scar tissue where the bladder was reconnected.
I don't see the reason for it, so I will wait another 6 months to decide.

Otherwise, I have very little to report in terms of my recovery, as I essentially feel back to 100%, besides very minimal issues I metioned in my last post.
Thanks very much to my friends here, and I always welcome anyone to contact me for advice, for my experiences, etc.

Good luck to everyone!
-Wayne

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Hi Wayne,

I have enjoyed your updates and postings. On December 1, 2009 I am 7 months post. I use one pad a day and none at night. 6 month PSA = <0.004.
I take cialis but no erection results. Yes it is good for blood flow. My wife is okay with no erection but, it bothers me. I am continuing with patience.
Happy Thanksgiving to You and thanks for the boost!

shubbysr (jim)

PCaT
Posts: 3
Joined: Dec 2009

Hi kkauppi. I was just curious as to why you cancelled your two radiation treatment appointments. Were these just consultations to learn more about these treatments? I can totally understand any trouble with making this type of decision since I'm at that same point myself (just diagnosed a couple of weeks ago). Incontinence is one of my main quality of life concerns following any treatment choice. Your situation sounds a bit more complicated if you are already experiencing some of these problems. It seems like all of the common treatments have this as a possible side effect to one degree or another. This is one of the toughest decisions I have ever had to make. As of today I still have at least three options on the table; surgery, brachytherapy, and some form of external beam radiation maybe even proton beam. Good luck to you with your decision.

Tom

kevinwise
Posts: 4
Joined: Oct 2009

I am 50 years old and was diagnosed with PC this past October. I had a 12 sample biopsy with 2 showing cancer. Gleason scores were 3+3 in each sample and my PSA was only 2.6. I had Da Vinci surgery last Tuesday 1/12/10. So far it looks like everything was self contained. I will know more tomorrow when I return for my follow-up visit. The reason I wanted to respond to this was to let people know what to expect from the surgery. After I woke up from recovery and had to move into my hospital bed, I felt like I had done 5,000 sit-ups and looked like I had gained 25 pounds. No one told me they would pump that much gas into my abdomen to complete the surgery. I had really bad gas pains for two days and it was extremely painful to get out of bed. Once I got out it was hard to straighten up all the way due to the soreness of those muscles. One week later I feel so much better. While still sore, I can now bend over and touch the floor. I walked 5-6 times per day for 10-15 minutes while in the hospital and have continued to walk 20-30 minutes at least 3 times per day. I would highly recommend walking this much to anyone. Not only did it help relieve the gas pains but it helped me get over the soreness much quicker. Also, I week later, my ab is back to the normal size. Good luck to anyone with recovering from this surgery.

whubbs
Posts: 77
Joined: Sep 2008

Just had another PSA check.. still less than .1 (or undetectible)!

Dr. Ash Tewari and I will meet once more in November for my 2 year anniversary and then again every year thereafter.

I couldn't be happier right now. Dr. Tewari and his team did a PERFECT job on me. For that I can not thank them enough.

It was a dicey first few months, but I've been essentially back to 100% for almost a year now.

Scars have healed and erectile function has been completely restored without any 'help'.

Incontinency is a strong word for what remains, and as Dr. Tewari put it recently, the prostate served as a sort of contractor at the end of a urinary stream which would pull a remaining drip 'back in'. Without it, that one miniscule drip, not even a drip, remains.
So, it takes a little longer to get that completion, but worth it.

Anyone contemplating a robotic procedure? Get into NYC and visit Dr. Ash Tewari. He and his team are world class, leading the path to very successful and minimally invasion robotic prostatectomies.
(I saw someone mention that he is 'out'? I saw him last week with no mention of it. Anyone have Tewari related news?)

whubbs
Posts: 77
Joined: Sep 2008

2 years since my Davinci prostatectomy by Dr. Tewari in NYC and still enjoying the zero PSA results.
I wish the best for everyone and know there is life after this treatment!
Feel free to tap me on the shoulder if you want candid and honest answers to the tough questions- cobrabite427@yahoo.com

Happy Holidays and Happy New Year!
May the new year bring happiness and renewed health to everyone here.
-WH

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Celebrate! Dance to the music like the kitten in your 'profile'
Congrats and a health New year to you.

Larry

LabLover
Posts: 1
Joined: Mar 2011

I would really like to thank each and every one who has posted to this site... I have sat here and read every comment and it was definately an eye opener for sure. I also have been diagnosed with prostate cancer.. scale of 3+4 total 7. It was found in two of the samples. An 80% strip and a 30% strip. My Dad had prostate cancer about 94 or 95 and opted with the radiation therapy.... he has had nothing but trouble since... uncontrolled leakage and bleeding rectum from the radiation. Most of the symptoms went away after a few years but in the last few years all the symptome have returned... he has be cauterized (not sure of spelling...sorry) to stop the bleeding.... he was put in a hyperbarric chamber.. all sorts of guinnea pig ideas to combat his problems... he now has a sling to help his bladder. SO needless to say, eventhough radiation has come a little way in advancement ... (they don't shoot so close to the edges of the prostate)I have elected to have the robotic surgery to have the cancer removed. I am scheduled 4 weeks tomorrow. Reading all these blogs has helped me prepare. I am not looking forward to the whole thing but, at least I know what to expect thanks to all your posts. Knowledge is power and you have all given me the power to be ready for my big day... and year to come.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

LabLover,
Sorry to read about your father and your start on this journey but glad that you found the forum. Everyone is very willing to help as you see. If any questions just ask and someone will know the answer!

Keep us posted how you do.

Larry
19 months post surgery
Pre Suregery Gleason 4+3 - 7

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Lab,

As you noted in your post, radiation treatments have improved significantly in the past 15 years with such procedures as HDL brachytherapy, IMRT, IGRT, tomography, and CyberKnife. The side effects your father experienced are unfortunate and were relatively rare even in the mid-90s but the relatively broad pelvic exposure common then is in no way like the very precise dosage administered today that can take into account the real time movement of the prostate and deliver sub-millimeter accuracy.

But I do understand your concerns and wish you the best success in whichever treatment you chose to follow.

K

whubbs
Posts: 77
Joined: Sep 2008
 
whubbs
Posts: 77
Joined: Sep 2008

Hello everyone!

(I'm reposting because I accidentally posted in the middle of the thread Yell)

I've recieved many emails from men all around the world since I posted my experience with robotic prostatectomy treatment.

It is now 5 years since my treatment and I wanted to drop a line to give some insight into 'life after davinci'..

My PSA still remains 0.0 !! LaughingYay! It remains a concern, every 6 months or so when I get blood work done, my stomach ties up in knots worrying about metasized cancer - which scares the crap out of me. So far so good. (knocking on my head and wood)

I'm now 46 and ED issues are minimal - my brain just needs to be engaged. I now understand what its like for women! Not such a bad thing really. I do very occassionally deal with an issue there, but 90% of the time everything is great. Nothing a blue pill can't help on the 3 or 4 occasions per year they happen - not bad if you ask me.

Incontinence is not an issue, however I do experience a drop here and there, full bladder and exerting myself certain ways, coughing, sneezing, etc. might create a drop.  I think this is very common and really not an issue in the grand scheme of things.

Living with issues like these rather than living with the 'wait and see' possibility of an invisible cancer spreading outside the prostate is a no brainer. (I do find it odd reading posts from men who mock those who decide to get treatment - we all have a comfort zone, personally I couldn't wait to get it out of me and don't regret that decision for 1 minute - I'd hope that others could respect that personal decision)

Again, my recommendations to anyone considering a robotic prostatectomy are:

  • Find the BEST. I went with Ash Tewari, there are many others. Ask how many they do, what percentage result in incontiency and ED, oncological results, etc. If they can't tell you this - beware. They all should be tracking that and tying in with their patients years down to the road. A note on Tewari - I understand he is moving his practice to Mt. Sinai - I am not sure if he will continue his prostatectomy practice - however he has trained many surgeons at prebysterian in NYC and I am sure they remain cutting edge. Samadhi is also another great surgeon.

 

  • Ask if they are aware of and utilize nerve sparring techniques. They should. If not, heads up - a good surgeon with a davinci robot can leave you pissing yourself and playing pool with rope the rest of your life. Nerve sparring AND oncological results should be BOTH on the top of their priority list.  Don't be afraid of getting 2nd and 3rd opinions.  Once I shook Tewari's hand I knew he was the right surgeon for me. When I discussed with current urologist (Dr. Hesse in New Haven CT) at the time - he pushed the fact that there were countless ED treatments, that freaked me out and I cancelled his surgery - he then dropped me as a patient and told me not to return. Glad I made that move!

 

  • Do the kegel exercises! You'll thank me later. If I had done mine, I'd likely not be dealing with that drop I mentioned.

 

  • Remember blood flow to that area is important. Have regular relations before and after surgery - utilize ED meds to improve blood flow - this will benefit you greatly.

 

  • Get off the couch! Walk, exercise, get in better shape. This will make recovery easier and will benefit you all over.

Feel free to contact me if you have any questions - especially the sensitive stuff you can't ask your doctor. I've heard it all (probably close to 500 emails since 2008 surgery) and I'll give you the straight on all those intimate concerns you have.

cobrabite427@yahoo.com

Take care everyone and best of luck!

-Wayne

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Thanks for updating us and glad you are doing well!

 

Lewvino

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