Any tips on preparing for surgery on likely low-grade glioma?

Posted by spudlk @spudlk, Jan 1, 2020

September 30, 2019 I found out I have a brain tumor. They feel it is a low grade glioma but possibly a grade 3. Though my MRI’s show the tumor is stable, and no symptoms, I will be having surgery in March. Does anyone have any thoughts on things to be aware of or helpful hints of things to prepare for?

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Gd less you and keep you safe. You are in good hands

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I am currently on a watch and wait protocol for the inconclusive spot that is 8.9 mm. I live in Charlotte and am headed to Duke next week bc it is close to us and heard one of the best although I am scared surgeon will want to operate right away . Thinking I will want to have a 3rd opinion appt lined up . Which Mayo Clinic did you call regarding possible glioma( they still don’t know what my spot is) and was it easy to get an appointment. Duke was surprisingly very easy and just involved fed ex mri to them .

Did you also consider Johns Hopkins ? Just curious what i should set up. I know the guy I am seeing. At Duke is one of the best but seems like he takes out right away so no sure I will be ready to make a major decision like brain surgery so quickly .

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@ashley5423

I am currently on a watch and wait protocol for the inconclusive spot that is 8.9 mm. I live in Charlotte and am headed to Duke next week bc it is close to us and heard one of the best although I am scared surgeon will want to operate right away . Thinking I will want to have a 3rd opinion appt lined up . Which Mayo Clinic did you call regarding possible glioma( they still don’t know what my spot is) and was it easy to get an appointment. Duke was surprisingly very easy and just involved fed ex mri to them .

Did you also consider Johns Hopkins ? Just curious what i should set up. I know the guy I am seeing. At Duke is one of the best but seems like he takes out right away so no sure I will be ready to make a major decision like brain surgery so quickly .

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I will be at Mayo in Rochester, MN. It is 2 hours from our home. His name is Dr. Fred Meyer. He was recommended by several other doctors. My oncologist, from my home town, made the referral. It took about 2 weeks to get in. Does your doctor in Charlotte want to operate? The one thing I have heard is to make sure you go somewhere where they work on a lot of brain tumors. When Dr. Meyer suggested surgery, though still giving me the option of watch and wait, I felt there was something in his experience that told him it is the right thing to do. This doesn’t mean I don’t get nervous, but I think it is the right decision. Take care.

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I wish you the best. It is a big decision but listen to your instinct. Talk to Dr Meyer and ask questions. Everything will be ok.

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@ashley5423

I am currently on a watch and wait protocol for the inconclusive spot that is 8.9 mm. I live in Charlotte and am headed to Duke next week bc it is close to us and heard one of the best although I am scared surgeon will want to operate right away . Thinking I will want to have a 3rd opinion appt lined up . Which Mayo Clinic did you call regarding possible glioma( they still don’t know what my spot is) and was it easy to get an appointment. Duke was surprisingly very easy and just involved fed ex mri to them .

Did you also consider Johns Hopkins ? Just curious what i should set up. I know the guy I am seeing. At Duke is one of the best but seems like he takes out right away so no sure I will be ready to make a major decision like brain surgery so quickly .

Jump to this post

Hi, @ashley5423 – wondering if you have had your Duke appointment yet? If so, what did the doctor there say? Are you still considering getting more opinions?

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I am curious what is everyone size approximately their lesion was discovered and removed . My lesion is located on right temporal side and was found incidentally. So currently have no symptoms but 80% likely a low grade glioma 20% possible scar tissue from inflammation. It was found in October measuring 8.9mm x 7 mm. Had scan yesterday and it measured 10mm x 6.8 mm. Neurosurgeon thinks more likely from angle of scan than actual growth . He feels like because it’s so small and very rarely do people find them the small that he would have to take a lot of extra brain tissue out to make sure he got it all because that spot being a small as it is would not be so apparent once they are in the brain. He feels that we still have some time and would like to do MRI in five months to see if there’s true growth So there would not be a question as if it was an angle issue from MRI picture. Would you all feel comfortable with this has anyone had a lesion removed that was under 1 cm.

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