High grade Glioma - What questions should I ask?

Posted by eileen61 @eileen61, Aug 16, 2019

Thanks to the wonderful patient portal, I now know that my brain biopsy is positive for a high grade glioma. Unfortunately I haven't been officially told by my team yet. Needless to say, I'm totally panicking. I need to ask questions, but I don't even know what to ask at this point. Anyone out there that can help a newbie out?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Update to my diagnosis. It's at least a grade three anaplastic astrocytoma type of glioma. I'll be back at Mayo in Phoenix for my CT simulation and MRI and then once they decide on the radiation plan, I'll start the six weeks of oral chemo and radiation treatments. Waiting on insurance to authorize the proton beam treatment. Also, one of the genetic tests on the biopsy specimen came back as having a good affinity towards the oral chemo, so I'm thinking that's a good sign. I'm tired of waiting, want to get this treatment plan started!

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Hello @eileen61 Thank you for updating us. I am sorry to read of your diagnosis. I don't mean this to seem harsh, but I know in the case of my wife, the waiting for her diagnosis and changes, etc. were always harder than the times of taking action and knowing. Good luck with the approval from your insurance company for the proton beam treatment. It is amazing how fast medical science has progressed with these types of cancers. They didn't even have genetic tests when my wife was ill -- always a sign there is continued hope not only with the current therapies, but new ones we may not even be able to guess at today!

I also recall Mayo putting together a great interdisciplinary team for my wife's care. I trust yours will be too.

I wish you continued patience while you await the beginning of your treatments -- and strength, courage, and peace once they start.

Do you know when you'll be going back in Phoenix?

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Hi Eileen, I am sorry you a facing these big challenges. I agree that waiting really stinks! Leaning to navigate the healthcare system had been a challenge for me. I hope things go quickly for you.

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@IndianaScott

Hello @eileen61 Thank you for updating us. I am sorry to read of your diagnosis. I don't mean this to seem harsh, but I know in the case of my wife, the waiting for her diagnosis and changes, etc. were always harder than the times of taking action and knowing. Good luck with the approval from your insurance company for the proton beam treatment. It is amazing how fast medical science has progressed with these types of cancers. They didn't even have genetic tests when my wife was ill -- always a sign there is continued hope not only with the current therapies, but new ones we may not even be able to guess at today!

I also recall Mayo putting together a great interdisciplinary team for my wife's care. I trust yours will be too.

I wish you continued patience while you await the beginning of your treatments -- and strength, courage, and peace once they start.

Do you know when you'll be going back in Phoenix?

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Scott, I'll be back at Mayo on Tuesday Sept 3 for the CT simulation and another MRI.

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@pejiota4jack

Hi Eileen, I am sorry you a facing these big challenges. I agree that waiting really stinks! Leaning to navigate the healthcare system had been a challenge for me. I hope things go quickly for you.

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Karen, the waiting is the worst...you wake up and for a few seconds, you almost forget what you're dealing with. Until. Until you wake up fully and it hits you upside the head...

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@eileen61

Update to my diagnosis. It's at least a grade three anaplastic astrocytoma type of glioma. I'll be back at Mayo in Phoenix for my CT simulation and MRI and then once they decide on the radiation plan, I'll start the six weeks of oral chemo and radiation treatments. Waiting on insurance to authorize the proton beam treatment. Also, one of the genetic tests on the biopsy specimen came back as having a good affinity towards the oral chemo, so I'm thinking that's a good sign. I'm tired of waiting, want to get this treatment plan started!

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Hi @eileen61, here are some additional discussions on Connect where members are talking about anaplastic astrocytoma type of glioma
– Recently dx with Anaplastic Astroctyoma – was your treament successful? https://connect.mayoclinic.org/discussion/recently-dx-with-anaplastic-astroctyoma-was-your-treament-successful/
- Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? https://connect.mayoclinic.org/discussion/can-anyone-recommend-a-great-neurosurgeon-for-my-34-year-old-daughter/

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@colleenyoung

Hi @eileen61, here are some additional discussions on Connect where members are talking about anaplastic astrocytoma type of glioma
– Recently dx with Anaplastic Astroctyoma – was your treament successful? https://connect.mayoclinic.org/discussion/recently-dx-with-anaplastic-astroctyoma-was-your-treament-successful/
- Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? https://connect.mayoclinic.org/discussion/can-anyone-recommend-a-great-neurosurgeon-for-my-34-year-old-daughter/

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Thanks so much, Colleen! A wealth of info here!

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@eileen61

Karen, the waiting is the worst...you wake up and for a few seconds, you almost forget what you're dealing with. Until. Until you wake up fully and it hits you upside the head...

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Then I lie very very still and hope it passes. :0). I will be in Rochester on Tuesday to discover the options. I am begining to think a caveronus sinus tumor is rather rare.

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@pejiota4jack

Then I lie very very still and hope it passes. :0). I will be in Rochester on Tuesday to discover the options. I am begining to think a caveronus sinus tumor is rather rare.

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Hi @pejiota4jack and @eileen61, how did you respective trips to Rochester go? Did you happen to run into each other while you were there?
I'd love to get an update from each of you. What are the options? Next steps?

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I had a gamma knife procedure this morning! It was a whirlwind of appointments this last week but think this is the best path and we are blessed to be at Mayo.

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