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2 years 11 months ago #50360 by jeffrx
Hi Rebecca, as others have stated, if the cancer is "high-grade", BCG is usually recommended, as it helps to prevent the tumor from coming back. High grade types of tumors have a recurrence rate that is pretty high (>50%). Using BCG can help to reduce this recurrence rate and, from what I have read, is highly recommended in the case of high-grade papillary tumors. BCG is basically a weakened Tuberculosis (it is the same thing used in tuberculosis vaccines in children) that helps to stimulate the immune system to fight abnormal cell growth in the bladder.

I am in the same boat as you...just had the TURBT and they identified high-grade papillary, so I will start BCG soon. Another opinion would not hurt, right?

Best, Jeff

12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks

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2 years 11 months ago #50358 by LillianG
I'm in complete agreement with Sara Ann and Alan on this one. Please get a second opinion. May is an awful long time to wait with a high-grade diagnosis, especially with no treatment.

You can have your doctor send your slides to John Hopkins for a second opinion on the pathology. Per your post, the path report showed no muscle in the specimens. In my case, the tumor was deemed high-grade, but there was no muscle in the initial TURB samples. So to help ensure an accurate diagnosis, I had a second TURB to obtain a better specimen, and had the slides from both TURBs sent to John Hopkins to verify the pathology. Once I was fully healed from the second TURB, I started my 6 weekly treatments of BCG.

Please ask your doctor why he/she hasn't scheduled you for a second TURB - and why he/she hasn't scheduled you for BCG treatments.

I wish you the best. Please keep us posted.
LilyG

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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2 years 11 months ago #50355 by Alan
Rebecca,

I have to chime in also. May-which will be 4 months is is simply too long wait for a re-check on high grade cancer. While none of us are doctors, a follow TURB is often done on high grade to verify margins were adequate and a CT Scan of the urinary tract is pretty standard also. BCG immunotherapy is also a normal protocol. Does your URO see a lot of bladder cancer? So many deal mostly with prostatic issues or female issues.

Sara Anne said, a second opinion may very well be needed.

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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2 years 11 months ago #50354 by sara.anne
Well Rebecca, now you know what you are dealing with.

I am surprised that the urologist didn't prescribe BCG ASAP. Did he mention this or did you ask? High grade is not to be fooled with.

Perhaps a second opinion on the possibility of treatment?

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 11 months ago #50353 by rkp
I received my pathology report today. High grade papillary urothelial carcinoma. Carcinoma invades the Lamina propria (pt1). 4 x 2 x 0.7. No muscular propria (detrusor muscle) is present for evaluation. I am to return in May for another cystoscopy.

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2 years 11 months ago #50307 by rkp
Thank you. You listed a lot of good questions for me.
Rebecca

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