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Newly diagnosed, Arizona

4 years 4 months ago #46796 by Hwhitney
Sara Anne,

Thank you for responding and for the positive feedback! When I went to the doctor I knew SOMETHING wasn't right but never did I expect to hear the C word.

I will absolutely make sure I keep all of my follow-up appointments and hopefully have the initial diagnosis confirmed.

Thanks again!
Helena

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4 years 4 months ago #46791 by sara.anne
Helena, your initial diagnosis is as good as it gets with bladder cancer! How is that for a cheerful greeting :laugh: ?

Seriously, the fact that it was low grade and that muscle was present in the sample but was not involved in the tumor IS good news. The current thinking is that no additional treatment is warranted at the present time. HOWEVER (and it is a BIG HOWEVER) this type of cancer does love to return. This is why it is critical that you keep your every-three-month appointments. IF it does come back, and we hope that it won't, additional treatment options would be considered.

For your second opinion, you might want to ask about the age factor. We usually consider patients in their 20's to be "too young." It is possible that the consulting urologist might want to do a second TURB. Often the diagnosis changes when it is examined again. The second time the urologist has a better idea of what is there and where other problem areas might be.

I suspect that if the Mayo doctor agrees with the diagnosis, his/her recommendations would be about the same.

Good luck to you and please let us know the results.

Sara Anne

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 #46789 by Hwhitney
Good afternoon!

I was recently diagnosed with non-invasive low grade papiliary urothelial carcinoma - muscularis propria presnet but not involved by tumor.

I was diagnosed by a urologist here in Phoenix Arizona and I have an appointment with the MD Anderson facility also in Phoenix.

I am wondering if anyone has any suggestions for my second opinion appointment. Are there specific questions I should ask? My first physician said that I don't need to do anything right now - only come back for a scope in three months. I understand that I am not the typical bladder cancer patient because I am under the age of 45 and female and I don't want to make sure that the doctors aren't missing something because I am not what they normally see!

Thank you!
Helena

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