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  • Muscle Invasive Bladder Cancer

    Seeking out Doctors for RC

    Posted by NelsJenn on August 31, 2019 at 9:02 pm

    Start of Discussion
    0 of 0 replies June 2018
    Now

    Dear Fellow Members,

    How does one find a surgeon who does 25-35 RC per year and have been practicing your preferred RC for at least five years. At this point, I know which hospitals to focus on, but how can I find out ahead of time who to request?

    My first urologist didn’t inform me about new technologies, such as blue light cystoscopy/TURBTs, and just scheduled me for a TURBT. I was told he did an excellent scraping job (and there was a lot of scraping!) when I received a second opinion and was informed about how blue light can help with the TURBT procedure. As a result of this, I am realizing I have a responsibility to myself to educate myself on the different options in treatments and the quality of surgeons available to me.

    In other words, I wish to be an informed patient in the decision making process of my treatment. At the same time, I need to learn how to navigate through this process with knowledge, assertiveness, politeness, respectfulness, and cooperativeness.

    I believe my wife and I are excellent at cooperating when it’s appropriate. Any suggestions on how to solicit alternatives from hospital doctors, nurses, and/or administrators, would help us out a lot.

    Regards, Nelson.

    Bladder Cancer – Non-Invasive 2019
    High Grade – T1
    2 TURBT – 2019
    9 BCG Infusions – 2019
    Ureter Tumor Discovered – 2021
    sara.anne replied 5 years, 4 months ago 2 Members · 1 Reply
  • 1 Reply

  • sara.anne

    Member
    August 31, 2019 at 9:11 pm

    Hello again Nelson ! You are doing a good job of getting your ducks all in a line and knowing what questions you need to ask . Your best bet is to find the closest urology department or center that specializes in bladder cancer. This would be someplace like a medical school, NCI designated cancer research center, or well-known place such as MD Anderson, Memorial Sloan Kettering or Cleveland Clinic. And then ask your questions.

    Be aware as you listen to the answers that some surgeons highly recommend the only procedure that they know how to do and disparage the ones that they do not. There might be a good medical reason why one procedure would be better for you than another but it should be explained in medical terms .

    Sara Anne

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

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