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micropapillary bladder cancer

4 years 2 months ago #47168 by sara.anne
Believe it or not, I am also in the Portland area!! My urologist trained at OHSU and that is where I would go if I needed a second opinion. They are very highly regarded!! Think you are in good hands.

Any time there is a relatively rare condition, or an association with other health issues, it is very important to be treated by experts.

Will be thinking of you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 2 months ago #47166 by pugs
I am in Vancouver/Portland area and my second opinion is coming from OHSU. What I read from you connect to Brady University was more positive in time frame than I had heard. I am 61 and not the best candidate for surgery so this is a very hard decision for me, I am sure it is for everyone.

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4 years 2 months ago #47164 by sara.anne
So sorry to hear of your diagnosis. It is relatively uncommon (I understand that about 2% of bladder cancers are of this type.)

Where are you being treated? In the case of a rare type it is often a good idea to be seen at a major center, at least for a second opinion, to be sure that you are getting the best treatment possible. Both Johns Hopkins in Baltimore and M.D. Anderson in Texas have experience in micropapillary cancer. It does appear that bladder removal is indicated.

Here is a good summary of current information on this
http://bradyurology.blogspot.com/2014/03/micropapillary-bladder-cancer-i-have-it.html

Best wishes to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 2 months ago #47162 by pugs
Recently had a tumor taken from the bladder and expected to hear that it was "fixed" for now. Instead heard that what I have is rare and extremely aggressive, think my hearing shut down after that. I am looking at bladder removal and all of the lymph nodes up to the aorta, and no chemo or radiation or combo will affect it. Anyone have this or any information regarding this type?

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