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GBM Recurrence or radiation necrosis

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  • GBM Recurrence or radiation necrosis

    Hi Al and all, it’s been awhile since I last posted but it’s been 2 years 4 months since my daughter’s surgery and she’s been off of Temodar for about a year (she was on it for a year). She’s been getting the MRI every 2 months and she was clear until this month, when MRI showed a small white “matter” about 8 mm inside the resection area. My daughter’s NO checked the MRI from May and actually saw that something was appearing at that time but it was a bit smaller than this month’s MRI. NO told us that he cannot determine if this is a recurrence or not just by looking at the MRI, so he scheduled a PET scan for my daughter at the end of this month. He has told us that if this is a recurrence, this should be resected as this is the area where the GBM occurred and that it is operable. I have been freaking out about this and did some research and found that it’s difficult to distinguish between recurrence and radiation necrosis.
    Having said that, I wanted to ask if there are cases where it was initially assumed that it was recurrence but ended up being radiation necrosis. Also, is it actually better to have the radiation necrosis surgically resected?
    For various reasons, we’d like to avoid a surgery for few months and I’m actually worried how she will recover after the second surgery. BTW, the area is in the right frontal lobe and she received 60Gy of radiation 2 years ago.
    I’m crossing my fingers that it is not recurrence. But I am also preparing myself for the worst case scenario. Al, can you give me your insight on this situation?

  • #2
    I hate to say but it is more likely recurrence. Usually radiation necrosis happens sooner- although it can happen up to 3 years later, most is in the first year. If she has a surgery, there are 2 interesting things to consider. There is a new test that I sent a news blast out today about - which can tell you which drug might be the best to use, and you can consider gammatile implants. Ask the surgeon about both. Look at our video library for a webinar on telling recurrece from radiation necrosis. Ask your radiologist if they can do that.


    • Tiara
      Tiara commented
      Editing a comment
      Hi Al, thank you for your response. This is actually really helpful. I’ll take a look at your news and the link that you sent me.