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    First post on this forum – mother just diagnosed

    Posted by Sueinjuneau on July 2, 2015 at 10:14 pm

    Start of Discussion
    0 of 0 replies June 2018
    Now

    My second post:

    My mom, age 75, life-long history of cystitis finally had cystoscopy after six months of recurrent or continual UTIs that antibiotics were not treating. She had no blood in her urine and in frustration went from her urologist back to her PCP with an inch-thick file of prescriptions and lab requests and said “I’m in pain, and these antibiotics are not working.” She was sent for a CT pylogram, quickly followed by an in office cystoscopy, then an attempted TURBT which was abandoned when it was apparent that the entire bladder was involved.

    Path results shared yesterday: Grade 3 (high grade) pT3 tcc (tcg?) poorly differentiated squamous cell carcinoma. Basically her entire bladder is a tumor.

    Awaiting referral to oncologist and surgeon at Moffitt Cancer Center in Tampa, FL. for radical cystectomy and lymph node dissection.

    Can anyone share their experiences with this diagnosis, this cancer center and any of its surgeons and oncologists? It does look like a very good center for this type of cancer, offering the Davinci robotic and laproscopic surgery.

    Can you offer advice or share your story? I’ve asked her to consider a second opinion on histology from Johns Hopkins. And of course, we are hoping and praying that her lymph nodes are clean! I think the University of FL- Miami might be good for a second opinion. She’s located in central FL – Ocala.

    This is shocking. I appreciate your help –

    Kitty’s daughter Sue

    sara.anne replied 9 years, 10 months ago 2 Members · 3 Replies
  • 3 Replies
  • sara.anne's avatar

    sara.anne

    Member
    July 3, 2015 at 12:19 am

    I don’t know anything personally about Dr. Parekh, but on paper his qualifications look good….

    Sara Anne

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

    sueinjuneau

    Member
    July 2, 2015 at 11:54 pm

    Thank you Sara Anne – No, my mother never lived outside the US (I’ve lived in Africa, I understand the schistosomiasis connection with this type of bladder cancer). Her risk factors include being a hairdresser, thus exposed to analine dyes, and a life-long history of recurrent UTIs and cystitis.

    Thanks for confirming Moffitt as a good choice for this very rare cancer. Do you have any knowledge or opinion about Dr. Dipen Parekh at the University of Miami? http://uhealthsystem.com/doctors/profile/134106

    He, and the center appear to be very good. Her urologist has referred her to Moffitt, I would like her to get a second opinion and am looking for a center in addition to Moffitt.

    Thanks again –

    Sue

  • sara.anne's avatar

    sara.anne

    Member
    July 2, 2015 at 11:27 pm

    As you are aware, this is a rare diagnosis in the US. Did your mother ever live in Africa or another tropical country?

    Because it IS a rare diagnosis, she needs to be seen at a center that sees relatively complicated cases; her choice of Moffitt is an excellent one for a second opinion and treatment. If there is uncertainty as to the diagnosis, you might want to have the slides sent to Johns Hopkins, but if there is no doubt of the diagnosis it might not add information.

    Wishing her the best of 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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