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Here we go - CIS & BCG

10 months 2 days ago #56766 by sara.anne
Sorry...that question is "above my pay grade" and the only one who is familiar with your husband's issues is his doctor. I wouldn't be bashful about calling him/explaining the issues/and politely requesting solutions.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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10 months 2 days ago #56764 by Vh9246
Sara Ann,
You are so knowledgable about bladder cancer,BCG etc. I want to thank you for being so enlightened . By doing so your helping us who are new to understand this awful disease.
My husband has cis stage 0 , he went through the BCG treatments then 6 weeks later a scope . Dr told him it looked good and we will repeat the scope in 3 months. I believe it is every 3 months for two years then once a year after that. I will say he has some incontence now , dr said look at what we're doing to you. He gave him Mybetriq which is not only very expensive but it's not giving him the results he would like. Any input on this?
Thank you again for your time.

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10 months 2 days ago #56761 by sara.anne
CYSTITIS CYSTICA is not an uncommon finding along with bladder cancer. It is sort of a vague condition of irritation, probably as a result of the cancer, and is not really of any concern. It is sort of like having an insect bite and the skin around it sort of getting irritated also. It was also part of my path diagnosis and we never even really talked about it. The CIS was the critical part and BCG fixed that!!

And with all due respect to your urologist, CIS is NOT pre-cancerous. It is, as you have read, one of the more dangerous forms of bladder cancer if left untreated.

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 2 days ago #56760 by Alan
Regor,

You are certainly asking the right questions! At the same time and, I don't mean to sound flippant, I have also learned that I must trust the team I chose and simply forge ahead. With CIS you know you will be getting BCG. At the same time I would be asking your doc about extra irritation in cystitis should the BCG make thing worse or, he may be saying that the CIS causes it. I don't know. He is in charge.

Keep posting away. I have been traveling for a week and just catching up with posts.

The positive note is you should be on your way to looking back in 6 months and say this wasn't too bad. There are ALWAYS people in worse condition!

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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10 months 2 days ago #56759 by Regor
Thanks Anne.

It's very confusing for the laymen. We all read so much, and talk to our Doctors, read posts.
My Urologist has referred to my CIS as pre-cancerous, but in the same sentence will say I have Bladder Cancer.

I understand CIS (as it's own Stage (Tis) and the High Grade and urgency to get to my BCG, what I am really struggling with is the CYSTITIS as also found in my Pathology report. The Web has not been friendly to help me, and even searching here doesn't bring up a lot of past posts.

FINAL PATHOLOGIC DIAGNOSIS
A. Bladder, left lateral neck, biopsy
- FOLLICULAR CYSTITIS WITH CYSTITIS CYSTICA


B. Bladder, left posterior neck, biopsy
- UROTHELIAL CARCINOMA IN SITU
- BACKGROUND OF FOLLICULAR CYSTITIS

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG starts Dec 2019

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10 months 5 days ago #56724 by sara.anne
Regor, I need to comment on your readings about CIS.

There is CIS and CIS. In some cases, particularly breast cancer where it is getting all the attention, something called "CIS" is indeed pre-cancer or maybe not cancer at all. There has been a lot of brough-ha-ha in the press about the "controversy" since most breast cancer surgeons seem to be recommending no treatment at all.

CIS in bladder cancer is totally different. It is a variant of uretheal carcinoma (the one that appears as little "mushrooms" growing up from the bladder surface.) Carcinoma in situ in the bladder appears as a sort of rash on the surface of the bladder. IT IS ALWAYS CONSIDERED HIGH GRADE and is especially dangerous for several reasons. First, because it is high grade, meaning that it has the potential to grow and spread relatively rapidly. Second, because it is not a discrete tumor, it is not possible to confidently remove it surgically, as in just cutting out the little mushrooms. We are very fortunate to have BCG available (when it IS available) since it has been shown to be very effective in the treatment of CIS.

In bladder cancer classifications, it is considered grade TIS.

Hope this clears things up a bit.

Sara Anne

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