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Low grade and BCG treatments

10 months 22 hours ago #54728 by sara.anne
Yes, Joanne..... "papillary urothelial neoplasm of low malignant potential" is medical-speak for low grade bladder cancer. Since it has returned, BCG is what is indicated.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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10 months 22 hours ago #54727 by Joanne2
Sara Anne,
I requested a copy of my pathology report. The report states "papillary urothelial neoplasm of low malignant potential." My doctor said the LGBC returned... is that the case? I am scheduled to start a series of 3 BCG treatments tomorrow, Can you or anyone give me your thoughts on this?
Confused - Joanne

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10 months 4 days ago #54713 by sara.anne
Low grade does pose problems on how to treat it. There is no medical contraindication for using BCG in these cases, EXCEPT that it isn't wonderfully effective and it does have some side effects. Also, the side effects are cumulative so
many docs don't want to use it prematurely since it might make it harder for the patient to tolerate when it might really be needed. Since low grade can be monitored by frequent cystoscopy, and since it might (hopefully) never return, many urologists wait on the BCG. If the low grade DOES return, then the "big guns" of BCG are used.

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 months 4 days ago #54712 by Joanne2
Hi Sue Ann,
Yes it was low grade the first time too. I am basically starting over. I am 46 years old and my doctor is being proactive, is what he told me. I haven't seen that BCG is contraindicated with low grade... is it? I am definitely worried and am going to ask for my pathology report when I go on Tuesday. I have quite a few questions for my doctor. I'm still putting my faith in God though. Prayers are appreciated. I will continue to keep you all in my prayers as well.
Joanne

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10 months 4 days ago #54706 by Eight15
Jack,

Just want to say thanks for all of the information. I have a lot of homework to do! You are a wealth of knowledge and very generous with your time. The forum is lucky to have you!

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10 months 5 days ago #54703 by Jack R
Eight15,

Guidelines are just that - guidelines. The patient, history and treating physician must all be primary in the decision-making process of how to treat an individual.

Guidelines and expert consensus opinion are medicine's way of describing treatment paths that have been shown to produce repeatable outcomes for SOME portion of the [inadequately] described patient population. That outcome is NOT promised for any individual patient; the guidelines are just a starting point for the consideration of individual treatment options.

As you dig deeper into the works of Dr Donald Lamm and Dr. Mike O'donnell and others, factors such as "how soon LG tumours return" becomes a factor in decision making. The search for biomarkers that might identify those patients at risk for grade advancement are ongoing, and would be a much welcomed discovery.

At about page 13 of the consensus document the long term results of a variety of BCG schedules are discussed and displayed graphically. Although there is debate about the schedules, there are scant actual long term studies published that are conclusive.

Fortunately, we have doctors and care teams to guide us in our battle with BC. If all we had were guideline-driven treatment, some portion of us would likely receive far less than appropriate care.

Other consensus documents exist. The American Urological association and the Canadian Urological Association publish their own. These version dig deeper and evaluate the level of the underlying evidence. And there are thousands of single author publications. Below are links to the two additional association source documents.

http://www.auanet.org/guidelines/non-muscle-invasive-bladder-cancer-(aua/suo-joint-guideline-2016).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771569/

Yes, I have read too much these past 3 years.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 , round 3
Begin year 4 with cis T0
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