Neo bladder recommendations

7 years 7 months ago #51804 by Lisarhdi
Replied by Lisarhdi on topic Neo bladder recommendations
Thank you. I appreciate your sharing this with me.

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7 years 7 months ago #51802 by GKLINE
Replied by GKLINE on topic Neo bladder recommendations
Lisa
I have to agree with Sara.
I didn't realize when I told you about neos that you were female. Sara is correct to caution you about this alternative.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 7 months ago #51775 by sara.anne
Replied by sara.anne on topic Neo bladder recommendations
Lisa, just a word of caution. Neobladders are much more problematic in women than in men....for some reason our plumbing doesn't "hook up" as well. There ARE women with great success with a neobladder, but there are others who are either incontinent or super-continent. Therefore you MUST find a surgeon who has done MANY of these on WOMEN successfully. Your results will depend entirely on the skill and experience of the surgeon.

You also will find urological surgeons who do not do many radical cystectomies who strongly recommend one type of diversion. What this means is that they only know how to do one type of diversion. You want someone with a LOT of experience with neobladders, and with lots of experience with radical cystecomies in general. MSK is one, USC in Los Angeles is another......

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Lisarhdi

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7 years 7 months ago #51774 by Lisarhdi
Replied by Lisarhdi on topic Neo bladder recommendations
Thank you so much for getting back to me. I really appreciate it. One more question, if it's ok. Are you happy with the outcome of the surgery? Is it something you would recommend?
And best of luck to you...
Lisa

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7 years 7 months ago #51765 by GKLINE
Replied by GKLINE on topic Neo bladder recommendations
Hello
I've had a neo and it is indeed major surgery. And THAT is why you need a Great Hospital and a Great Dr. I live in upstate NY and I would have gone to MD Anderson in Texas to get the surgery done. I was not going to have the surgery done by someone that had limited experience in this kind of surgery.

There has to be a hospital in your general area that has done a LOT of these surgeries. I know that Sloan is a Great Place to have this surgery done. I believe that your insurance company can be persuaded to let you go there. Ask your employer to call the insurance carrier. I have done this for one of my employees when, at first the carrier said no. The ins co does not want to lose a client over something like this.

I wish you the best in your journey thru insurance red tape. As if dealing with cancer is not enough.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 7 months ago #51760 by Lisarhdi
Neo bladder recommendations was created by Lisarhdi
Hi. I tried to get into Sloan Kettering for neo bladder surgery. I know it's a major surgery. Insurance is denying it and wants me to go local. Any recommendations? I live in NJ.
And if you've had the surgery I would appreciate any input.
Thank you so much.

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