Robotic vs. Traditional "open" Cystectomy with Neobladder

1 week 1 day ago #61562 by sara.anne
A surgeon once told me, regarding the question of "robotic vs open surgery," that this is NOT the right question to ask.  The correct issue is the expertise/experience of your surgeon regardless of the exact techniques!  You are definitely finding the correct answer.

Wishing you all the best on your upcoming surgery!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 week 1 day ago #61561 by briteleaf
Thank you for your posts. I also have a T1 bladder cancer. Mine is high grade and the BCG didn't touch it so I'm scheduled to get neobladder surgery Feb.8 at the Portland VA hospital. I had a choice of robotic or open surgery. I asked my doctor about the technique he prefers to use, which is the W-shaped, Hauptmann and he drew me a picture of how the sides of the W are sewn together and then folded over to form the body of the neobladder. He has performed the surgery over 120 times. I asked him about his own preference and he actually prefers the open surgery. He feels that hands on gives him a better take on the surgery but told me that both are equally successful. He likes to feel the condition of the ileum and the kidney and urethra connections. I would prefer to go through more healing pain in order to make this difficult operation easier for the surgeon in any way so I'm having open surgery. Thank you for your post. It helps me to know I'm not the only one.

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9 months 1 week ago #61267 by VinceD
Hi All,

Just an update. I had the cystectomy  at OHSU on March 28th, and I am currently at home recovering. The surgery itself was successful and I am progressing as planned. The only problem encountered is they did find CIS in the ureter margin. They removed as much as they could in order to make the attachment, but there is still a likelihood of cancer. Other than that, I am feeling pretty well aside from the incontinence, which was expected once they pulled the Foley catheter out. I still have the SP catheter in for bladder maintenance and it will be removed in a few weeks once the bladder starts to expand and I my muscles heal enough to support it. 

I was pleased with the robotic surgery. I was able to get up an walk almost immediately and have been walking a few miles every day on my treadmill. The biggest issue so far has been with digestion. As you can imagine, taking part of the bowel to build a new bladder is not without challenges for the digestive system. I've been dealing off and on with Ileus, which is a blockage of the intestine. It is something that usually resolves itself, but it can be quite uncomfortable. 

One other tip for people who undergo Neobladder surgery. Make absolutely certain your supply chain for the bladder maintenance is well understood prior to the surgery. They will send you home with enough material to get you though a few days. However, what I found is that you wind up doing more irrigation than the recommended twice daily, and the supplies do not last as long as you would expect. I've made few runs over to my Kaiser Urologists office to get supplies to tide me over while waiting for the medical supply company to deliver. It is just something you probably don't want to deal with after the surgery.

Thanks all!
Vince
The following user(s) said Thank You: joea73, briteleaf

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1 year 2 weeks ago #61110 by Alan
Vince,

I am adding an attachment that I bookmarked many years ago where someone compiled a list of possible questions on cystectomies

File Attachment:

File Name: preopquest...1-11.doc
File Size:19 KB
. Some apply and some don't.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Attachments:
The following user(s) said Thank You: VinceD

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1 year 2 weeks ago #61106 by sara.anne
That is good news!  Hope you go through with OHSU!  I also live in the Portland area and know that there are several very competent surgeons there who are experienced with neobladders.

Let us know how this works out.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 2 weeks ago #61105 by VinceD
Thanks Sara Anne! While my company is with Kaiser, I have paid for their "Added Choice" plan which allows me to go out of network. This is really the first time I have tried to use it and it wasn't as easy as I would have hoped. After some discussion with their member services group and some back and forth with my urologist, I was able to get him to give me the referral to Oregon Health Sciences University Hospital. He is also putting me in touch with the local Kaiser surgeon who does robotic surgeries. Kaiser will do the cystectomies robotically, but has not done intracorporal neobladders robotically. My urologist made some inquiries with contacts from OHSU and he believes they might be able to do the surgery. Hopefully, it will be covered by my insurance. The conversations with member services give me some confidence that it will, but you never know until you get the preauthorization. 

Vince

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