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Three Month Cystoscopy

3 years 1 month ago #53431 by Mistersac
Thanks Jack. Would you agree with Sara Anne's opinion that I should have had maintenance BCG after the initial 6 BCG treatments, and a successful biopsy? Would you also concur that with a clean biopsy that included 6 biopsied areas that I should be positive about this follow up cystoscopy.

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3 years 1 month ago #53428 by Jack R
Mistersac,

How to treat BC is a hard question; when can treatment stop? In the end, each of us has to make the decision of what treatment we will accept, being a particular doctor's recommendation or one of the community "standards".

Following a widely accepted treatment plan, there are few surprises. When a plan lacking in future details is offered, the present and future possibilities are less clear.

Below are links to three consensus documents on the treatment of NMIBC, including BCG usage. There are slight differences between the recommendations.

BCG decisions include; when to start BCG, how long to continue BCG, how to proceed if initial BCG fails, what is BCG failure, when is maintenance BCG recommended, and options after BCG fails and/or there is a grade increase in the cancer.

Canadian Urological Association, 2016
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771569/

NATURE REVIEWS UROLOGY | CONSENSUS STATEMENT 2015
http://www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html

Consensus NMIBC American Urological Assn 2015


The first and third (long) articles consider the strength of evidence and recommendations. The second article is very heavily and directly influenced by the work of Dr. Donald Lamm - Lamm speaks directly to maintenance BCG treatments.. All of the articles consider and include Dr. Lamm's work.

I found these documents helpful in reaching my decision. I hope they will assist you.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back...

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3 years 1 month ago #53426 by Mistersac
Sara Anne I fully appreciate your advice, and this forum has been a great source of guidance through this journey. I know that my URO does and has treated many cases of bladder cancer. Where can I find research that speaks to the value of BCG maintenance. I find it hard to fathom that when I asked directly about BCG maintenance, and said I was willing to go in that direction if he thought it was warranted, that he wouldn't have ordered it if he thought it necessary. Thanks again for your continued advice, and the good work you do on this forum.

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3 years 1 month ago #53424 by sara.anne
Of course, we are not doctors here...just patients like you who have "been there, done that" AND done a lot of reading.

My "opinion" on the cystoscopy is just that....most of the times it is fine. Only very occasionally is it "bad." and
the results of the biopsies don't affect my opinion at all.

I would seek a second opinion at a place that treats LOTS of bladder cancer to see if maintenance BCG is indicated.
Most urologists primarily treat prostate issues and are not really up to date on current best practices in cases of
bladder cancer.

Sara Anne

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

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3 years 1 month ago #53423 by Mistersac
Is maintenance considered standard in the community, or is his determination based on the 6 biopsies, and what he saw during the procedure a calculated call? In your mind does this change your opinion that this cystoscopy should be faborable?

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3 years 1 month ago #53422 by sara.anne
Wow. Given your biopsy results, the first series of BCG worked well. Why wouldn't he want to improve the odds that this would continue? IF your biopsy results had indicated a return of CIS so soon, that would have been a failure of BCG. He might have tried it again, but this would NOT have been good news. Maintenance is NOT for BCG failures.

Sara Anne

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

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