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How to get 2nd opinion?

3 years 9 months ago #52275 by mwhuang
Thanks again, Sara. Does CIS typically have any symptom at all?

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3 years 9 months ago #52274 by sara.anne
Some urologists use mitomycin wash after a TURB and some don't. I didn't have it. IF you are diagnosed with CIS, the current "standard of treatment" would start you off on BCG as soon as the bladder has healed from the TURB. CIS appears sort of like a rash on the surface of the bladder and isn't removed by a TURB like a papillary tumor is.

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: mwhuang

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3 years 9 months ago #52273 by mwhuang
Thank you very much, Sara. Looks like i could be in the shoe you were in 8 years ago and congratulations on your great outcome and that is really helpful. So for this TUBRT, removal of bladder tumor and retrograde pyelogram were done. No mitomycin c were used. Should it be used? Guess if the biopsy confirms CIS, i probably will go for another TUBRT for CIS? Is TUBRT first treatment for CIS as well or go directly with BCG?

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3 years 9 months ago #52272 by sara.anne
Welcome to the Forum, though I am sorry that you need to join us.

While the urologist's notes are indicative of a problem, you really won't know what you might be facing until you get the path report and discuss with the doctor what his treatment recommendations would be. I am sort of amazed that an assistant would be giving you ANY information at this point...where was the doctor?

After you get the results and have your "chat" (with the doctor, I would hope) you will need to assess your options and decide whether to get a second opinion. Since you are in the Bay area you have at least two great options. Stanford recruited Dr. Ella Skinner a few years ago and she is reputed to be great, and there are other good people in her department. UCSF is also very good.

To get a second opinion, you just inform the appointment people that this is what you want when you make the appointment. They will be able to tell you the procedure for getting your records forwarded to them....it usually requires a written request from you to your current doctor.

The second opinion will do one of several things. It can confirm that your current doctor is "right on" with the diagnosis and treatment plan and you may decide to stay with him/her. It may tell you that the plan if fine, but you may feel more comfortable with the new doctor and this would be the time to change, if that is what you decide. Or it may tell you that there are other options that your current doctor has not proposed.

Finally, let me reassure you a bit. I also was diagnosed with papillary as well as CIS. That was over 8 years ago....I had BCG treatments and now have no signs of cancer!!

Good luck to you.

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: mwhuang

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3 years 9 months ago #52271 by mwhuang
I am new to this forum. Just had tubrt done three days ago and waiting for path report. Based on dr's operative note that I got from his assistant, I think things don't look so great: 3um papillary tumor(though 2.1um on ultrasound), also a red patch area( cis?). They were biopsied. I am very scared, but I know I have to get up and fight this. I am already thinking about a 2nd opinion on this as this is critical. I live in sf Bay Area so I guess ucsf is the place to go? How you guys get the 2nd opinion? Thanks a lot, Mark.

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