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Treatment options for CIS, TCC
This is from a new user named Tammy. She asked that I post this for her as she finds her way around the site. She does not have her path report so she does not know her grade only that the TCC was not invasive. —————————————————————————–
I do need some advice. I just had my 3rd recurrance of a pappilary tumor, 2nd CIS. I also have IC (interstitial cystitis). Did 6 BCG’s in spring of 06. Very bad cystitis even after reduction to 1/2 strength. Had three papillaries removed Sept of 06. Tried to do more BCG that fall but could only hold the first one about 40 minutes and the second I lost before I ever left the hospital because spasms were so bad so I quit taking them.
The doctor wants me to do more BCG since this papillary had CIS at the base. My IC is so bad that I go to the bathroom so often that I would never be able to hold BCG for 2 hours. I would have to travel an hour to have the treatments and riding in a car jars my bladder and makes it even worse.
Do you know of any alternative treatments people have tried and where I can get info about them?
I am 52 years old. Live an hour from Cleveland, Ohio. Have you heard of any good doctors in the area? I have thought about just having my bladder removed. All this sure gets old.
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