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Treatment options for CIS, TCC

11 years 9 months ago #20368 by Tammy
Thank you for the replies. Pat,I would very much like to talk with someone who has Bladder Cancer and IC. I will check out the CC info.
Thanks so much!!!!!!!!!!!!!
Tammy

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11 years 9 months ago #20360 by Patricia
Tammy...The Cleveland Clinic is one of the best in the country for bladder cancer or urological problems.
www.ccf.org
my surgeon was Dr. Inderbir Gill who did my surgery laproscopically.
Gene Beane had Dr. Campbell..who works along side Dr. Gill
http://my.clevelandclinic.org/staff_directory/7/Staff_6257.aspx
Take a look at the site for the Glickman Urological Institute.
We also had one gal on here who had interstitial cystitis so bad she opted for an Indiana Pouch and is doing great. I'll have to go into my archives but i will put you in touch with her if you would like.
Pat

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11 years 9 months ago #20359 by Rosemary
Also, I want you to know that you are not the only one to have a bad experience with BCG. I had to discontinue also. The reduced dosage did nothing to reduce the bad pain, bleeding and other side effects of the treatment...

Ro

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 9 months ago - 11 years 9 months ago #20358 by Rosemary
Tammy,

It sounds like you have really been through it.

The troubling part of what you are describing is the CIS issue. I do not have CIS, so, I am not all that familiar with the treatment options, except to say that I have heard here that BCG is the treatment of choice for CIS. From what I have researched, CIS is an insidious disease and not a condition that needs to be left untreated.

The other issue of concern is the recurrance following so soon after your BCG treatment.

I'll say it like my Doctor said to me about my pathology report (T1 G3)...

"This is kind of eyebrow raising."

I'm not a Doctor and don't want to give advice (not exactly anyway) but just please realize that this condition can not go untreated.....

Regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 9 months ago #20341 by Cynthia
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

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