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8 years 4 months ago #33053 by Kenneth
Cajun Lady Bug,
I've been going to MD Anderson for a month now and I feel very good about it. I have had 2 BCG sessions so far for my CIS. You've found a great site with alot of good people and advise. Being in La. I bet you are close enough to Houston. I drive 2hrs and a little from Austin. I work offshore with a bunch of "Crazy Cajuns" and they are a hoot. I would definately give MD Anderson some consideration.
Ken

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8 years 5 months ago #32993 by sara.anne
I can only second the recommendation that you go to MD Anderson, and as soon as possible. Too much going on there. And I was first tentatively diagnosed with IC, but after biopsy it was changed to bladder cancer...CIS. My uro said that CIS could cause ALL the symptoms attributed to IC.

It really sounds as if you need EXPERT advice (I mean more "expert" that we are...but we are pretty good :)) and
SOON.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 5 months ago #32986 by dukel
Very sad and upsetting to read the story of your journey this
morning. With children who are 9 and 13 that will need you for a long time, you owe it to them and yourself to get to a place like
MD Anderson.
Wishing you and your family the very best!
Duke

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8 years 5 months ago #32982 by mmc
As Jim and Pat said, the trip to MD Anderson is a good idea.

It's always a good thing to get the top experts in the field to check you out and confirm what others may or may not have found/told you.

You sure have had a lot of problems over the years. Hope you are able to get this all taken care of.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 5 months ago #32980 by Patricia
OH Wow ladybug...thats a lot wrong. Did you get any pathology reports from the prior surgeries? ..or did he just burn them off?
Thats so a no no. At any rate i do think you need a really great second opinion and if you're close to MD Anderson I would contact them now and tell them your story and see when they would want to see you. I would recommend Kamat, Grossmann, or Dinney.
We had one gal on here a few yrs ago who did not have bladder cancer but such a horrible case of interstitial cystitis that she did the RC and had an Indiana Pouch put in. She is doing great and so relieved she doesn't have to mess with all those meds anymore not to mention the pain.
Please fill us in with any further information.
Pat

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8 years 5 months ago #32976 by Humpy
Lady Bug, That is exactly what I did. Said screw it, and remove it. I am 14 months post op, and have not looked back.
We encourage a second opinion at a cancer center or University hospital. Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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