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feedback on progression, treatments

3 years 7 months ago #50054 by pjm
Thanks for your prompt response. I have a name for a second opinion at the Univ of Chgo. I am buying time with this next TURBT as after the 1/1 I will have greater flexibility for second opinions.

I have no idea how that emoticon crept into my message. I apologize.

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3 years 7 months ago #50044 by sara.anne
Yes, bladder cancer has the unhappy habit of coming back, and BCG is probably the best bet for keeping it away. When BCG fails, and sometimes it does, you are sort of between the proverbial rock and the hard place. Rather than risk even further progression, bladder removal is often the best option.

If you have been reading the Forum, you will see that we have sort of a "Theme Song" here....GET A SECOND OPINION. You are going to have to make some serious decisions soon, and you want to be sure that you have all the possible options presented to you. Yours is a classic situation where it would be extremely important to get a second opinion at a center that sees LOTS of bladder cancer cases and is familiar with those like yours. At the very top of our home page under the tab HELP is a link to many good treatment centers:
http://bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder

Or, let us know where you are located geographically and some of our members will have suggestions for you. You need to be seen at an academic or NIH-designated center where all the possible options can be discussed. Even is you have to travel a bit to get there, it would be worth it.

IF it should be that radical cystectomy is the recommendation, it is not the end of the world! Many patients live full lives without their original equipment! Some of our members scuba dive and drive race cars.

Again, I would stress, that it is important that you have all the very best information before you make your decision. Will be thinking of you....please let us know how you are doing.

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 7 months ago #50041 by pjm
67, male. Diagnosed 4/15 Ta non-invasive papillary high grade. TURBT with follow-up deep muscle biopsy which was clear. 6 BCG treatments. Subsequent cyto revealed small spot of CIS. 3 more BCG treatments. Cysto 11/30/15 reveals a new tumor( not cis). TURBT scheduled next week.

Depending on results of the next biopsy, treatments are 1) heavy duty chemo followed by bladder removal if tumor is muscle invasive. 2) if non-invasive , then bladder removal.

Questions: A) Is the progression typical for the unlucky BCG outcomes?
B) Is there less radical alternatives out there? I realize that this is s/b addressed to my docs, and will be, but I am curious what others have found.
C) Any experience out there with diversion alternatives?

Thanks

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