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cysto last week not so good

3 years 1 month ago #49864 by Rockyiss
Hi Mary , If you can go to New York that's where Dr. Schoenberg is, formerly of John Hopkins . He is one of the best out there you can look him up, he is all about bladder cancer. Good luck on your turb I know the stress all this can cause and how hard it is to think good thoughts but you have come thru a lot and you will make it through this too. Rocky

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3 years 1 month ago #49863 by cancersucksbigtime
thanks Sara Anne.
After this TURB, I will discuss a second opinion with my esteemed urologist!
He is my go-to guy.
Mary

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3 years 1 month ago #49859 by sara.anne
Fox Chase is an NCI designated Cancer Center, but its primary expertise does not appear to be in bladder cancer. It wouid probably be an "OK" choice. BUT if you can travel a bit, two of the very best in the nation are just a couple of hours away....Memorial Sloan Kettering in NYC and Johns Hopkins in Baltimore.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 1 month ago #49857 by cancersucksbigtime
Hi Sara Anne,

I live just outside of Philadelphia. I do have a contact at Fox Chase Cancer Center. They are all about cancer, and I think after next week's turb, I will contact them about my situation.
Thank you for your input.
Mary

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3 years 1 month ago #49854 by sara.anne
So sorry to hear your news, Mary. I don't remember where you are being treated (and am having eye troubles which is limiting my 'puter time). BUT if you have three recurrences in such a short time, it would seem imperative that you get a second opinion from a MAJOR center that treats lots of bladder cancer. It is obvious that the treatment with BCG is NOT working. This is not something that you want to fool around with.

If you let us know where you are located, someone may have suggestions as to where you might be seen. Or, on our Home page, there is a Treatment Center Finder
http://bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder
Good 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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3 years 1 month ago #49852 by cancersucksbigtime
I think I told you all that my doctor couldn't do the last cysto because I had a UTI. Well, he did it last week (Oct.28), found "something" which turned out to be another cancer.

This is the third recurrence I've had since August of 2012. I'll be having another TURB next Thursday, Nov. 12, and since I had a high grade kidney cancer in 2012, I also have to have a CT with contrast of chest, abdomen and pelvis next Monday. Needless to say, my husband and I are not very happy.

I've had 6 mitomycin treatments and, so far, 15 BCG's. This is pretty upsetting, and I'm feeling sad and fearful. Any words of wisdom would be greatly appreciated.

Thanks you all,
Mary

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