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Here we go - CIS & BCG

1 week 4 days ago #56773 by Vh9246
Thank you Jack. That is basically what their told us but no one likes to be inlcontanent. My husband will get scoped again in March I believe this is every 3 months for two years then once a yr after that. As long as the scopes are good as they have been then we will get through this.

Thanks again for your response.

Vivian

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1 week 4 days ago #56767 by Jack R
VH9246

Addressing the question of CIS and incontinence, based on my 3+ years of treating.

My bladder capacity shrinks by about 50 % following BCG, MMC, etc, and can take 2 to 3 months to recover - translating to more frequent trips to the bathroom. Treatment irritates the bladder = more frequent trips. Eventually the bladder rebels, and even more frequent trips. Eventually, for a little while things settle back down to near normal, then treatment begins again.

My solution is planning liquid consumption based on upcoming activities, knowing the location of clean accessible restrooms in the community, AND Depends, or your favorite store brand of "Adult Security Undergarments". Fancy word for a diaper.

Unfortunately, it seems to be one of the side effects of treatment.

Do check with the care team to make sure that there is not some organic cause for the incontinence. Always let the team know what you are doing, and where you need help.

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 , round 3
Begin year 4 with cis

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1 week 5 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
Forum Moderator
The following user(s) said Thank You: Vh9246

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1 week 5 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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1 week 5 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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1 week 5 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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