Two TURBTS since Jan and still no BCG treatment..

11 years 9 months ago #42433 by annabelle112
Replied by annabelle112 on topic Two TURBTS since Jan and still no BCG treatment..
Alan and Catherine..your input and support are invaluable to me! I was able to read your most recent posts from my phone, but having difficulty "seeing" to replyi.. More soon when I can get back on the px.. Kuddos for auto spell.. B)

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11 years 9 months ago #42428 by CatherineH
Replied by CatherineH on topic Two TURBTS since Jan and still no BCG treatment..
That is wonderful news, Anne. I did see a note on the LSU site about their issues since Katrina but thought that may have been resolved by now. Perhaps one of your doctors could assist you with a referral to Tulane if needed. Please let us know what you find out!

Hope you're feeling better!

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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11 years 9 months ago - 11 years 9 months ago #42427 by Alan
I know Houston is some distance away but drivable (I live in New Braunfels west of Houston 3 hours away). For my $$$ if your insurance applies M. D. Anderson is without equal in my opinion. At the same time Tulane & LSU I believe are teaching hospitals so there are certainly good sub specialists there. So far I haven't had to use them as I have been clear 4+ years but, any other problems they are my back up. They are fairly quick (most got in withing 2 weeks) and have had too many other friends (some with BC some with other types) with great results not to recommend them. Dr's Denney, Grossman and Kamat for bladder cancer are world renowned and am sure there are others in that department I am sure are very good. There are many good hotels right next to the hospital.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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11 years 9 months ago #42426 by annabelle112
Replied by annabelle112 on topic Two TURBTS since Jan and still no BCG treatment..
Good morning Catherine..We actually have a smaller LSU hospital where I live, however, most patients needing specialized treatment must be routed to a larger hospital much further away, with long waits for appts. It is a sad reality for too many people, especially since Katrina. But, on a brighter note, I found links (here) yesterday which led me to some Urologist who specialize in oncology at Tulane in New Orleans... Only an hour away! I am going to contact them Monday for more information. Thank you!!

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11 years 9 months ago #42396 by CatherineH
Replied by CatherineH on topic Two TURBTS since Jan and still no BCG treatment..
Hello Anne... I see you are in Louisiana. Is it possible for you to go to LSU School of Medicine's Urology Dept? I think medical schools seem to be more up to date on the latest information.

I do hope you will seek a second opinion, even if it's just to learn that your current uro is on the right track.

Hugs,
Catherine

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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11 years 9 months ago - 11 years 9 months ago #42391 by annabelle112
Replied by annabelle112 on topic Two TURBTS since Jan and still no BCG treatment..
Hi Catherine- Thanks so much for your reply. I am surely thinking about a second opinion, especially after reading other posts here today. This has all been such a whirlwind with so many other medical issues. Confusing and difficult to prioritize with different doctors involved. I am frightened by the delay of treatment and the timely process w every current issue. I know I must be patient- no pun intended- and am thankful my bladder cancer is not worse. But, seeing how fast the tumors returned, after only 12 wks frightened me. And as I mentioned, the second surgery was much worse than the first. I am hopeful that this does not become a "routine" surgery leading up to the eventuality of more complex bladder cancer, possible loss of my bladder because of the lack of treatments.
It is comforting to see success of you, and Sara Anne...Thank you both for your words of wisdom!

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