How do I get out of this....

12 years 5 months ago #39984 by Cynthia
Replied by Cynthia on topic How do I get out of this....
Douglas, I am sure some of the guys will chime in about their quality of life with a neobladder. I am a seven year survivor with an Indiana pouch and I have to tell you that life is pretty good from where I stand. This whole thing at first has a nightmare quality to it that if for sure. But with time it becomes our new normal and life goes on. You are in the thick of it at the moment and all of us that have been there understand the stress you are under. I hope you find a home here in our community and the day comes that you are writing to some guy that is where you are today telling them to take a big breath and take it one step at a time to get to the other side. Keep us informed.

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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12 years 5 months ago #39982 by Douglas
How do I get out of this.... was created by Douglas
I have been diagnosed with stage t2nx muscle invasive bladder cancer as of Aug 15 and I am a 49 year old male. I have been doing a trial with 3 months of neoadjuvent chemo at Sloan and am finishing up my last chemo in about a week. After that there will be a cystocscope and then the plan is a neoblader with prostate and lymph node removal. I don't know too much about what to expect although I'm reading the good and the bad on the internet. I am really hoping in a month or two someone in the world comes up with a bladder sparing option. My first chemo I had a bloody discharge and my urine has been running clear since then. I am really fearful of the loss of quality of life issues. During the breaks between chemo I feel so energetic and normal. It's highly stressful.

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