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Follow up after TURBT/biopsy
Met with URO today. Dx: widespread CIS in bladder. He could not complete the resection because of the extensive coverage on the inner lining. 4 out of 5 biopsies show CIS, no invasive carcinoma identified, the 1 that did not had a single von Brunn’s nest identified. I was told that he did not go into the muscle for the biopsies because of the extent of the surface CIS. He wants to start BCG as soon as the bladder heals enough. I have read that investical treatments are not effective for the vonn Brunn’s nest and should not be used? We talked about 2nd opinions again, this Doctor does not like MD Anderson Urology,he said they do great work on other cancers but fall behind on the urology side. He recommends Dr.Ian Thompson at Texas Health Science Center in San Antonio. I have an appt. on the 15th with Dr.Kamat at Anderson that I am going to keep.
Ken -
8 Replies
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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.
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
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.
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.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
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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
Kenneth,
You are doing the right thing by going to Kamat at Anderson. They are highly ranked in urology. # 1 in Cancer and #9 in Urology as ranked by US News and World Report.
Hmmmm….He doesn’t know if its already in the muscle and wants to start BCG? There couldn’t be any invasive identified if he didn’t get a deep enough specimen.
Let us know what Dr. Kamat says. Get all the slides from this TURBT to take with you and get the surgery notes and any other doctor notes your urologist has. He should have copies of your pathology report also.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
