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10 years 10 months ago #32974 by cajunladybug
new here was created by cajunladybug
I was diagnosed with BC May 2004. Had 3 tumors removed and didn't have to do any kind of treatments. Remained cancer free for 6 years and 11 days. I have a really bad case of interstitial cystitis. Currently taking Elmiron 3 times a day and Ditropan 2 times a day. During those 6 years, I have had several surgeries -3 tumors removed, endometrial ablation, bladder sling, interstim neurostimulator implant, polyps at the bladder neck cortorized last August and another surgery May 31. Diagnosed with Carcinoma in Situ. Not in the bladder wall or muscle. Doc says my bladder looked like a shaggy rug of polyps. Another mass at the bladder neck. Couldn't find my right ureter b/c the mass was so large. Had to put a stint in it to keep it from closing. Got it removed on Friday along with my first BCG treatment. No side effects from that. He left the mass of polyps on my left ureter so not to mess with that kidney. He's hopefull that the BCG will kill those cancerous boogers. Still considering going to MD Anderson, but not sure at what stage of the journey to go. Thinking after the first 6 week BCG regiment. Doc says we'll wait 3 weeks then go in and biopsy again. I guess it'll depend on those pathology results too. Have good days and bad, just like everyone here. Still don't know why b/c I don't fit any of the criteria for someone who gets BC. I'm at the point of just saying remove it and be done with it. I'm tired of fighting this battle. 6 years already, and don't know how long this new journey will take. I just want my life back - for myself, my husband and my 2 children (9 and 13). I look forward to chatting with you all here.

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10 years 10 months ago #32976 by Humpy
Replied by Humpy on topic new here
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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10 years 10 months ago #32980 by Patricia
Replied by Patricia on topic new here
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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10 years 10 months ago #32982 by mmc
Replied by mmc on topic new here
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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10 years 10 months ago #32986 by dukel
Replied by dukel on topic new here
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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10 years 10 months ago #32993 by sara.anne
Replied by sara.anne on topic new here
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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