• Tumor Board disagree with how my doctors want to treat me. Has this ever happened to anyone?

    Asked by sbmontgomery on Sunday, July 29, 2012

    Tumor Board disagree with how my doctors want to treat me. Has this ever happened to anyone?

    Some think I only need radiation and some think that I should just wait and see what happens. They want to see if my vision changes. My vision changes day to day and my doctor wants to do chemo and radiation to prevent any more damage to my eyesight. In my guts I know something is not right and that I need treatment now. I hate this waiting game. Has anyone had to deal with this problem of the Medical Board not agreeing with the doctors of a patient and what did you do? I really trust the doctors I have and my main doctor has over 36 years in treating this type of tumor. (grade II astrocytoma)

    7 Answers from the Community

    7 answers
    • nancyjac's Avatar
      nancyjac

      Is this Tumor Board a medical consult or an insurance determination?

      over 4 years ago
    • sbmontgomery's Avatar
      sbmontgomery

      consult

      over 4 years ago
    • Leetledeez's Avatar
      Leetledeez

      I am newly diagnosed with the same type of tumor so I feel your pain and confusion. My tumor board determined that my tumor was inoperable due to its location. I met my oncologist for the first time on Friday and went in to the appointment all "gung ho" to start radiation, chemo, SOMETHING. My oncologist (who was part of my tumor panel) wants to hold off on treatment. As she explained it to me, we want to hold off on pulling out our biggest defenses for the time when they will have the greatest impact, which unfortunately is when the tumor is "active". I am taking part in a clinical trial using special MRI studies to pick up on the metabolic activity of the tumor which should give us as much advance warning as possible that the tumor activity is about to pick up.

      As my oncologist said, "I know it's against human nature not to want to DO SOMETHING". I'm going to give it 3 months and see what the MRI says then, keeping my doctor informed of any changes in my symptoms.

      Perhaps you could send your records out for a 2nd opinion? I wish you the best of luck!!

      over 4 years ago
    • sbmontgomery's Avatar
      sbmontgomery

      The thing is my doctor does not agree with the tumor board she plans on talking to my radiation oncologist. I just don't understand why the board would not agree with both my neuro oncologist and my radiation oncologist. Am waiting for the phone call today to see what will happen. This hurry up and wait game sucks.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      In that case, as I understand it, the decision is still yours to make. The Tumor Board is offering a second opinion. However, it would still probably be a good idea to make sure that if you decide on a course of treatment that is contrary to that opinion, that your insurance will still cover it as standard of card.

      over 4 years ago
    • hikerchick's Avatar
      hikerchick

      What I can offer, in a general way, is my experience. If I am sure I am not reacting to fear, but rather really in touch with my intuition, my intuition is my best guide. Some call it the "God voice." When I can't separate the fear out of the equation, my best bet is to weigh the answers of others.
      I'm glad you have a lot of knowledgeable people helping you and I wish you the best.

      over 4 years ago
    • sarge68's Avatar
      sarge68

      yes i had the exact same issue at Moffit in tampa fl the " board " said no to a biopsy of the brain after their #1 neuro-oncologist told them i needed it. That was the last straw i moved to boston so i could get treated at Dana Farber. Now i know thats a bit extreme but this is also the second go round with brain cancer so you know i wasnt going to waste any more time than i had to. Moffitt is like the # 10 cancer hospital in america.

      over 4 years ago

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