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12 years 11 months ago #6247 by mznoregrets
Hi Bob,

When I was dx'd with breast cancer 6 years ago I was treated in Zion at CTCA - it hasn't been back and I was taken good care of there. However, when I was dx'd with bladder cancer this past January - I decided to not go there. We knew mine was invasive and already stage 2 atleast, plus they would not disclose how many diversions a year they were doing. I had no time to waste or play games. They have been a good facility for many types of cancer for sure. It just wasn't a good choice with my bladder cancer.

With the hospitols in and near Chicago, have you considered any of those? I believe Lyola is a decent facility. I had spoke on the phone with the head of urology there but didn't get there as my insurance had issues. I stopped looking towards insurance and employer were in Wisconsin so it was U of Madison next.

My own personal experience with bladder cancer has made me encourage people to seek the 2nd opinion and to educate yourself with your specific dx. Your dx of T1G3 .....It is invasive - not superficial and high grade - nothing to play with. I would focus on chosing my team and getting knowledge. Keep vigilant as things get dicy if the cancer gets beyond the bladder wall as mine did.

In closing, let me again sing praises for this board :) These folks here are top notch and compassionate. I was a freaked out newbie - lol - and had quite a few freak outs along the way that have been straightened out here. There is no doubt in my mind that without the help of friends here....I would not be here, prayers all, Holly

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12 years 11 months ago #6233 by Alice L.
Hello Bob,

So glad to see you here. I promise you, you will not regret it. Great Bunch of People and very knowledgeable.

I too am pretty new here. I have beening fighting BC for the last two years with a cysto every three months and surgery to remove the new tumors. I yet am waiting to have a clean check up. I know it won't be this time around though because the blood is already showing in the urine.

Pat, Rosemary, Zach, Tim, Holly, and others have been keeping me pretty straight and have been so very helpful and understanding. Thank goodness because my Urologist sure wasn't.

I am seeing a new one July 18th and I really am so excited. I do hope it will go better this time around with communication and options.

Just keep asking questions until you get your answer because there will be someone here that will beable to help.

Good Luck and stay in touch on the board.


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12 years 11 months ago #6232 by BobR
We live in Northern Indiana, just a few miles south of Ft. Wayne.

The recurrance is a small tumor, no CIS.

BCG's appear to have worked for that. :)

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12 years 11 months ago #6230 by Patricia
What part of the country are you in Bob?

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12 years 11 months ago #6228 by Rosemary
Hey BobR,

Welcome to our board. You and I are the same stage and grade, though we differ in the CIS category. The CIS makes your BC a horse of a different color. There are lots of folks around here that have suffered with, are dealing with, are living with, CIS. I am hoping that some of them will jump in here and tell you their stories and how they have been treated and have coped with BC and CIS.

I'm glad you are here and keep on talking. You'll find lots of people have been where you find yourself right now. I would also like to say that finding and keeping a good Urologist is a critical factor in becoming your own best advocate to fight your BC

I'm thinking that you need to find out if the recurrance was a tumor or CIS. I'm a little unclear about that.

Holly, it's great to hear from you.

Your BC friend,

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

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12 years 11 months ago #6225 by mznoregrets
Hi BobR,

Sounds like you might be near my area...I am in Illinois near the Wisconsin border. I have been to a few facilities here - let me know if I can share any info to help.

Also sounds like a somewhat similar start as I had....local uro found cancer, did turb then said we would do BCG. After I investigated the path report ( grade 3 T2 with deep muscle invasion and no clean margins) I opted to get better care. That was 1/31/ 3/13/07 I was T3 micropapillary TCC and urachal cancer to boot. I had RC and diversion, now on 3rd month chemo. I am glad I listened to the friends here to help me find my way :)

Take care, let me know if I can help, Holly

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