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Follow up after TURBT/biopsy

8 years 6 months ago #32368 by Alan
Brenda,

Thanks. I am fortunate that my local URO studied at UTSA where Dr. Lamm started the BCG protocol and has done a lot of bladder cancer work. Long story short. I wrestled for awhile about going to MD Anderson for BCG & more tests but he has continually done things "textbook wise" and gone the extra mile such as reading my CT Scan where the radiologist said "no tumors visible or appararent" when he saw my tiny tumor. He also read the path report personally to confirm high grade all before doing his first cysto that confirmed BLC and resultant BCG treatments. Had it been any more complicated or my URO not been extremely versed in BLC, MD Anderson would have been it. That being said, MD is my backup and not to lose the intent of this thread for Kenneth. All I have read about your situation and facts it is good you are headed that way. Keep us posted.

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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8 years 6 months ago #32364 by bmathews9744
My BCG is being done in Atlanta by a urologist that has done many BCG treatments. I will have my follow-up cysto's at MD Anderson and any surgery that may be necessary.

Brenda

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8 years 6 months ago #32363 by Alan
bmathews9744 wrote:

Kenneth,I to have CIS in several areas in the bladder. I went to MD Anderson for my second opinion and was very pleased with the care I received. I plan to go back in August after I finish my BCG treatments. I just had my 4th BCG treatment yesterday. I am now taking 1/3 dosage because I had a very hard time with the 2nd & 3rd treatments.

The doctor I am seeing at MD Anderson is Dr. Grossman. I sure hope and pray he is good, Maybe others will direct us if they have had a bad experience with MD Anderson.

Brenda


Brenda,

Was just curious, did you go ahead and have the BCG locally a opposed to MD Anderson?
Alan

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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8 years 6 months ago #32362 by Alan
Kenneth,

I concur with both Mike and Pat. MD Anderson is the next step. It is also my backup should I need further help. While I don't know much about Dr. Thompson, the UTSA medical complex is a good one also. That is where Dr. Lamm pioneered the BCG protocols. From what I remember, you also had kideny stones? Just another reason to get a "complete" team as other sub specialists are availble if an extra consult is needed. The good news is you are getting closer to getting a handle on things. It will work out.

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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8 years 6 months ago #32356 by Patricia
Kenneth..remind me where you are? I can't find old posts anymore.
You have an unusual case in that you have a large area of CIS further complicated by von brunns nest which is deep into the layers and unexposed thereby making BCG not a viable treatment.
Dr. Ian Thomson isn't a bad choice for maybe a third opinion. He consults with a lot of surgeons on unusual cases. I would personally want to hear what he had to say.
http://urology.uthscsa.edu/bio.html#thompsoni
Kamat, Grossman, and Dinney all respected uro/surgeons at MD Anderson. I'd like to hear what they have to say also.
Do keep us informed.
pat

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8 years 6 months ago - 8 years 6 months ago #32351 by mmc
I seriously think everybody should just start with 1/3 strength. Read as much as you can from Dr. Lamm's studies and his website.

Best chance of being able to tolerate the treatment, least chance of side effects, and no reduced efficacy has been shown even as low as 1%. As long as you get the desired reaction, it's strong enough.

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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