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2nd opinion

4 years 4 months ago #46720 by 4Phil
It sounds to me that you have been cured! Surveillance and keeping positive are the keys to your continued success! My best to you! Laurie

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4 years 4 months ago #46719 by sara.anne
I am now on once a year!!! I admit that it makes me a little nervous to go that long.

SA

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 4 months ago #46718 by 4Phil
Hi Sara ANNE,
Oh geeze, how did I goof up your name I don't know! I'm glad you got a kick out of it and gave you a blast from the past. So you were very lucky that your first series of 6 BCG washes resulted in ridding the CIS, and that the subsequent maintenance BCGs have served you well! Congratulations to that and surely we all hope it stays away forevermore! Do you go for checks every 6 months or once per year? Laurie & Phil

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4 years 4 months ago #46717 by sara.anne
Laurie, your post made me laugh! My name is Sara Anne, and you called me "Sara Jane." That is what my mom used to call me when she got EXASPERATED!! :laugh:

Yes, as you understand, this is a matter of opinion. My BCG regimen appears to be different from your husband's...I had the six week primary series and then, for a period of two years, three weeks every three months. I had CIS and am now six years out with no recurrence. Bladder removal has never been suggested for me. BUT, I have already decided that IF the CIS comes back, the bladder goes.

So, very careful watch and wait or ????
Your decision!

Sara Anne (alias Sara Jane!!)

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

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4 years 4 months ago #46715 by 4Phil
Hello Sara Jane,
Thank you for your reply and encouragement. It was interesting to read that the census of the forum is 50/50. We have read that it is a debate even among urologists as we have experienced that with 2 Cleveland Clinic urologists. We are hoping that if someone on the forum has been in this situation of having BCGs beyond the normal 2 rounds, resulting in repeated biopsy reports showing all negative results, and yet the urology oncologist does not recommend continued surveillance but highly recommends RC. While statistics show that 30-60% of people with CIS will have a recurrence, what if one falls into the percentile that it does not recur? You would never know that if you opt for RC. The risk, however, is if the CIS does return, will it come back with a vengeance and be invasive? My husband's CIS is currently non-invasive. That is our dilemma and we are hoping someone on the forum can share if they personally had this situation and if they opted to continue with surveillance and won the battle for years and years to come. Ok, I'm a perpetual optimist, but only to a point. I want my husband to be around even if he must spare his bladder and learn to live with the chosen diversion. Thank you for listening. Laurie & Phil

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4 years 4 months ago #46710 by sara.anne
Laurie and Phil, I am not the original poster, but will try to reply to you. You are in the situation that is most difficult for patients. If it had started to spread, there would be no question...out with the bladder!! So you are left with two options, keep doing as you are and watch it closely, or go ahead with an RC.

Some of us were debating this just the other day at our Board meeting. And it IS a debate. However, you need to keep in mind that CIS is especially insidious and it IS high grade....which means that it can spread, and it can spread quickly.
About half of the people feel that they would continue to wait and watch...and the minute it returned again, they would of course have the bladder removed. And hope that this didn't happen.

The other half would say that it probably IS going to come back and why take a chance?

If you do decide to go the cystectomy route, you would have plenty of time to plan and investigate what type of diversion might be best. Lots of people lead very comfortable lives with a diversion...even scuba diving!!

Hard choice, I know.

Wishing you a lot of luck!!

Sara Anne

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

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