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Five Years - Good News and Bad News

5 years 3 months ago #46534 by GKLINE
Jeanne

I am a 6 year survivor with a neo bladder. I am sorry to have you in our club. But Welcome ! I generally have been happy to have my neo. Although every alternative has it's own set of issues. With me it is night time leakage.

But I understand that women have issues with neo bladders and while it may be the only choice for me..... it may not be for you. If some of our female members chime in and tell their stories, this may help.
Also, talk over the alternatives with your Dr. They have seen more than we have. If you trust your Dr. You can make an informed choice.

Wishing you the best of luck

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]
The following user(s) said Thank You: jbredbeck

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5 years 3 months ago #46527 by Cynthia
Lee good to hear from you sorry you are dealing with this but glad it was caught early. Good luck and keep us updated.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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5 years 3 months ago #46515 by jbredbeck
I am glad to hear your neobladder is working fairly well. May I ask you about it? I was recently diagnosed, will have my cystectomy in a couple of weeks and have to decide if I want a continent pouch with stoma OR go for the neobladder that will be connected through my urethra.

I am a 52 year old active, married woman who, until recently, hadn't even used the work "bladder" in a full sentence. Now it is all I am thinking of. I am scared of being incontinent, especially at night, and am not certain how I will handle getting a catheter up my urethra if I need to do that.

Are you will to share your experience with your neobladder so I can learn what type of things to expect (realizing it may be different for each person) as this may assist me in making what seems to be a very important decision for myself.

Thank you,
Jeanne

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6 years 4 months ago #44873 by Celestel1st
Glad they found that rogue cyst in time. Good luck with R2D2.

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6 years 4 months ago - 6 years 4 months ago #44867 by Alan
Congrats on the neo bladder 5 year mark and I take the early "hot spot" from CT is caught early and who knows, maybe it will just a cyst!

I am curious, I presume you have had cytolgys done also, did any of them show atypical cells prior to the CT scan?

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.

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6 years 4 months ago #44865 by Flamenco.
Hope all goes well with your surgery and recovery, and that you are very soon CANCER FREE,
Diane

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