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    My husband was diagnosed on 1/24/20 with GBM grade 4. Surgery is scheduled for 1/28. Everyone is stressing the importance of a second opinion, but we don’t have time, do we? I have friends with friends at Mayo and MD Anderson. One says get the surgery. The after treatment is what is important. One says postpone the surgery because it is the most important and needs to be done at a brain tumor center. It’s the weekend. I can’t get a hold of anyone until Monday morning, but first thing Monday we have pre-op appointments. I am afraid to postpone the surgery because of the tumor’s progression. I am afraid not to postpone the surgery because it is not being done at a brain tumor center. I am at my wit’s end. Can anyone offer some advice? Please! Thank you.

  • #2
    Go to the brain tumor center for surgery- you don’t have to know anybody there (if you have MRI result they’ll make a a good surgery right away) - just go there as soon as possible!

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    • #3
      Statistically brain tumor centers have the best survival rates - compared to regional hospitals

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      • #4
        Brain tumor center can accommodate you even on Sunday- they can do the surgery Then on Tuesday

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        • Dina
          Dina commented
          Editing a comment
          Thank you, Harvey. I am going to do my best to follow your advice.

      • #5
        My comments were made under assumption that your husband is stable for the time being. If not-an ambulance car could take you to the nearest brain tumor center.

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        • #6
          Good luck!

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          • Dina
            Dina commented
            Editing a comment
            Thank you!

        • #7
          If he is not stable then you have no time to play around with and just have the surgey as scheduled. If he is stable, I feel it is most important to have a good surgeon than just about anything else. We see over and over people having a surgery at a local hospital, then go to a major center for the follow up treatments only to be told they need another surgery now - more of the tumor can be removed, and usually there is less pain and problems from the surgery at the major center.

          A few things to ask about the surgery at the pre-op visit:

          How many brain tumor surgeries does this surgeon do a year? You can get an idea of how many he does from https://data.cms.gov/utilization-and-payment that tool lets you look up doctors and see how many brain tumor surgeries they did ON MEDICARE patients in 2017. (They do not have recent data). It is limited to Medicare which means diabled and people 65 and over. It might be half of the number they do when you look at all insurances.. (except for pediatric doctors - they usually won't have any medicare patients).

          What are you planning on doing? Try to remove a little tumor to make space (debulking), or try for a total resection. What neurological problems do you think are likely to result? What will you do with the tumor sample? Complete genetic testing at their hospital, send it to a lab like Foundation One, or freeze it to possible make a vaccine in the future. Will there be enough tumor to do all? How do they feel about Gliadel?

          Make sure all of the costs are covered by your insurance. Especially check that the anesthesiologist and lab participates in your plan. If the surgeon and the hospital participates, people assume everything is covered but wind up with huge bills for out of network care.

          Where do you live?
          Good luck. Most likely the surgery won't be as bad as you think it will be. The worst part is the worrying the night before and during the procedure. It has gotten so much safer and easier for the patient over the 35 years I have been involved with brain tumors.

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          • Dina
            Dina commented
            Editing a comment
            Musella - thank you for your reply.
            Tom is stable so I think we can wait.
            We were told it would be a decompression surgery. I was told by someone at BTN that this means a total resection is not possible. The tumor is in all four lobes. This fact has me concerned beyond reason.
            I have been researching my butt off and thankfully I had all of the questions you mention already on my list.
            We live in NC. I am trying to get into Duke. I left a message with Allan Friedman’s office and will follow up first thing in the morning. Someone suggested going to the Duke ER with our scans in hand. What are your thoughts on this strategy?
            Insurance is on my list of things to tackle. Hopefully I will have time tomorrow afternoon.
            Thank you again! This support group as well as Inspire by ABTA have truly been godsends.

        • #8
          How did it go?
          The FDA just approved gamma tiles for newly diagnosed gbm. Might be too soon to get it but ask the surgeon about it. They are wafers inserted at the time of surgery

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          • Dina
            Dina commented
            Editing a comment
            We are going to see Allan Friedman at Duke. Henry Friedman called about 7:30 this evening. I CANNOT put into words how helpful the “Brain Tumor Guide for the Newly Diagnosed” has been for me. I read all 138 pages (minus the pages on fertility!). I feel like we have a good plan of action and we are very hopeful.
            Are the gamma tiles the same thing as GLIADEL wafers?
            Thank you for your help. This forum has been such a light during this dark time. Truly.
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