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  • Where to get the TURBT done?

    Posted by jenfang on January 23, 2016 at 2:25 pm

    Hello,

    My mom and I are looking for some help, as we’ve been researching far too much (and given a lot of contradictory advice), and would really appreciate people’s thoughts on where to get a TURBT procedure.

    Here is the medical/insurance background: My mom had a cytoscopy on Jan 6th and the urologist spotted a tumor. The urologist thought it was small (<0.5cm) and looked to be low-grade. He then scheduled her TURBT for Feb 11th, so she has not been diagnosed yet. My mom has Kaiser HMO and lives in Denver, CO, and went to the Good Samaritan Hospital in Lafeyette, which I believe is affiliated with the Cancer Centers of America. Her urologist has 19 years of experience. She will have Medicare coverage in April/May 1st, which means that she can come to NYC (where I live), and have access to other hospitals.

    Here are the contradictory advices: we were told by other hospitals (Sloan and University of CO Hospital) to have the TURBT done at Good Samaritan before searching for a 2nd opinion, especially if medicare coverage starts later (and they strongly suggest we don't go out of payment as we are not that rich). But our friends and family strongly suggest that we go to the more renowned hospitals as soon as possible for the TURBT.

    My thoughts: I thought the TURBT is a common procedure, and we should wait for the diagnosis before getting a second opinion. However, I want to ask: should we either wait until April/May 1st for the medicare before getting the TURBT at a more renowned facility (which doesn't seem right to wait for so long), or ask for a second opinion in Kaiser (or at other hospitals) before the TURBT (but there is no diagnosis yet). Finally, is the TURBT something that's fairly important and that there is a difference between who's performing it that we should just bite the bullet and pay out of pocket?

    We really would appreciate people's thoughts as this is driving us neurotic before we even get the diagnosis!

    Thanks so much in advance for any thoughts on this.

    Jen

    jenfang replied 9 years, 1 month ago 3 Members · 5 Replies
  • 5 Replies
  • jenfang's avatar

    jenfang

    Member
    January 31, 2016 at 1:22 pm

    Thanks much!

  • jenfang's avatar

    jenfang

    Member
    January 23, 2016 at 11:08 pm

    Thanks Alan! Appreciate it.

  • Alan's avatar

    Alan

    Member
    January 23, 2016 at 10:54 pm

    Just to give you some more peace of mind, I concur with Sara Anne. She has great advice. Also, 19 years of experience from your URO is a plus. Good luck.


    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.
  • jenfang's avatar

    jenfang

    Member
    January 23, 2016 at 9:33 pm

    HI Sara Anne,

    I can’t thank you enough for your thoughts on this! I think we might try to get the TURB scheduled a bit earlier (since my mom has been getting so worried).

    Thank you!!

  • sara.anne's avatar

    sara.anne

    Member
    January 23, 2016 at 5:07 pm

    My advice……get that TURB done now!!. The urologist will remove as much of the tumor as he can and it will be sent to a pathologist for microscopic analysis. Only after the path report comes back (and you should ask for a copy) will you even know for sure that it IS cancer.
    A TURB is a relatively simple procedure and can get that tumor out of there.

    After the TURB and its results are discussed with you, you will have a better idea of what the situation is and make a decision then as to whether or not you need to go to a place like MSK. Often, if it is not a simple papillary tumor, a second TURB is done to be sure of the diagnosis. And yes, bladder cancer IS expensive to treat, partly because it has a bad habit of returning.

    And remember that Medicare does not pay the entire bill, which is why most people have supplemental insurance to cover the deductibles.

    Best of luck to you and your mom.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator

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