Home Forums All Categories Metastatic Bladder Cancer Where do I go next? Dad cancer in lymph nodes!

  • Where do I go next? Dad cancer in lymph nodes!

    Posted by Romanol on December 6, 2011 at 4:06 pm

    Hello,
    I am hoping someone can direct me on where to go for a second opinion/treatment option for my dad. He is 65 yr, 2 months ago found blood in his urine. He went right to the doctor and they though it was bladder cancer ( his mom died of bladder cancer). Found the bladder was clean. After more tests and exploratory surgery they found he had cancer on his ureter. The night before Thanksgiving he went in for surgery by Dr. Eun at Pennsyvania Hospital in Philadelphia. He removed the ureter, kidney and a small piece of his bladder. He also took out three lymph nodes that looked troubling that were located pretty far from the ureter up by his aorta. He did a flash test of those lymph nodes and found all three were cancerous. So the surgeon comes out and tells us the cancer “got out” and there is no curative treatment for him. He said that it actually was bladder cancer but it manifested in the ureter. I am stunned by this information. I want to do anything I can for him. We live near Philadelphia, but I have considered flying to Florida to get him into the Mayo Clinic. Is this the best option, does anyone know where I can take him for the most up to date treatment? The surgeon guessed he had about a year to live. He is not in any pain right now? He still has his bladder, he is walking around, laughing, talking? He didn’t even take pain medicine when they took his Ureter and kidney out – he was taking Tylenol!!!!! I just want to make the right decision and get him the best help to hopefully extend that 1 year prognosis as long as we can.
    By the way, we are still waiting to hear back from the pathology report. They said to wait 10 days. Yesterday was 10 days and they still haven’t called us back with the results. Does anyone know what I should be hoping to hear in those results. I guess they can tell us how bad the spread is and the stage, right? What key words should I be listening for when they call? Key words that will help determine the prognosis that is. I REALLY appreciate any information you can offer. I don’t know where to start. Thank you.

    Cynthia replied 13 years, 2 months ago 3 Members · 2 Replies
  • 2 Replies
  • cynthia's avatar

    cynthia

    Administrator
    December 6, 2011 at 5:46 pm

    I am sorry your family is going though this but you are doing the right thing trying to get information and seeking a second opinion.

    Sara Anne mentioned Sloan Kettering and she is right Dr. Dean Bajorin is one of the tops there.

    http://www.mskcc.org/cancer-care/adult/bladder/bladder-expert/dean-bajorin

    Dr.Mark Schoenberg is with John Hopkins both are considered to tops in the world for bladder cancer. Dr. Schoenberg will answer emails,his email is on his contact page at this link.

    http://urology.jhu.edu/markschoenberg/index.php

    MD Anderson is known world wide for its research and expertise in bladder cancer

    http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/genitourinary/doctors-staff/index.html

    I hope this helps and please keep us updated.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • sara.anne's avatar

    sara.anne

    Member
    December 6, 2011 at 5:34 pm

    What a horrible situation to find yourself, and your father, in.
    One of the best places in the world for complicated bladder cancer is Memorial Sloan Kettering, in NYC. I am sure that others with personal experience there will chime in with the names of doctors they would recommend.

    You are absolutely right in deciding to get a second opinion…Often there ARE things that can be done to help.

    Sara Anne


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

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