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Hi - just diagnosed with High Grade Non Invasive

10 years 11 months ago #22640 by DIB
Getting a second opinion (even before starting BCG) is a wise course. I believe that current research is that a re TUR for non-invasive BC is the gold standard (often with a single dose of mytomycin C (MMC) as a one time only chemo at the time of the reTUR (which has no side effects since it is contained solely with the bladder); there is a very recent paper by a doc at Memorial Sloan Kettering to that effect if I can find it.


I was diagnosed (dx'd in shorthand) in May 2009 with non-invasive, high grade BC and went through weeks of what I think is the same anxiety as most do. My signature block below shows what I have gone through and I can say that this board has been the single best source of info (including what questions to ask the docs - I saw three uro's locally before I settled on one) on BC.

My biggest concern was not dying, my docs convinced me that was unlikely if I followed the recommended course of treatment. But losing my bladder was (and still is) my biggest fear. I'm learning to take it in what is for now essentially three months chunks of time. BCG treatments,, followed by waiting for the cysto, followed by a high anxiety week of waiting for the path results to see if anything came back since the initial and re TURs.

I am now at a place where, while not happy with my situation, I understand the options and believe I (with the help of others here) am in the correct position to make the best informed decisions for me.

Be well,
David

Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.

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10 years 11 months ago #22630 by Alan
Tony,

A lot of wonderful, supportive people here. Ask and someone will try to find the answer if they don't have it. The Bladder Cancer cafe is also a great info source: http://blcwebcafe.org/content/view/91/101/lang,english/: start at home and work through it.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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10 years 11 months ago #22608 by Rosemary
I was dx'd almost 3 years ago (in January) and have not had recurrance. My Stage and Grade was T1 G3 (High grade non muscle invasive, but invasion through first layer of epithelium).

This is my story in brief:

TURB + Mitomycin in January 06
ReTURB + Mitomycin in March 06
Began BCG in June of 06 (6 courses + 3 maintenance)
2nd round of maintenance BCG in 2007
Discontinued BCG in July of 2007 (reactive arthritis)
Recurrance free as of 11/22/2008

Good luck. You are at the right place.

Rosemary

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

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10 years 11 months ago #22602 by sara.anne
Hello, Tony!! We all came to this forum with little knowledge and a lot of fear. I have learned so much from the Site and the members of the forum. I was diagnosed last January with CIS on my second TURB; six weeks of BCG, clear cystoscopy, three weeks of maintenance BCG, and A CLEAR CYTOSCOPY last week.
Set now for another three months.

Just a few words of advice. Someone said to trust your uro. First, be sure that you have a uro in whom you feel confidence.
Second opinions are good and can help your level of confidence.
Reading the information on this web site can help you judge also. You want someone who sees a good number of bladder cancer patients, not just a few, and who is up on the most recent research, since it is changing rapidly.

I feel very fortunate to have found a uro who is young, current on the latest stuff, and who WELCOMES my active participation and research into my care.
Sorry for the long-winded diatribe, but felt that I wanted to share.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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10 years 11 months ago #22595 by Nix
Welcome Tony,
I understand all your questions. We have all been there. I was Dx'ed with Ta CIS 07 - I always go for second (sometimes third) opinions. My Uro is very comfortable with this and likes that I am aggressive in my treatment. I have had the 6 BCG washes plus two maintenance and just yesterday had my Cysto. It has been 6 months since my last BCG and so far all is clean.Try to get all the info. you can as it helps in knowing what to ask. You came to the right place.

Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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10 years 11 months ago #22594 by wsilberstein
It's been almost 8 years since I was treated for high grade superficial (TaG3) bladder cancer with a TURB and Mitomycin C. I've never had a recurrence. I wish you the same.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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