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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Hi, @spudlk - it makes sense to connect with others who've been through the process of preparing for a surgery on what your medical team feels is likely a low-grade glioma or possibly a grade 3.

I'd like to invite other members who are currently preparing for or have been through a brain tumor surgery (as patients themselves or with a loved one) to offer any advice on what to be aware of or things to prepare for, such as @pranas @kristin1990 @dianeem @IndianaScott @debraannk.

Wondering what things you have done thus far or are thinking of doing to prepare for your surgery, @spudlk?

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The first thing I am doing is going to Rockport, Texas for 6-7 weeks to get out of the cold, snowy Wisconsin weather! I am trying to find things to read about recovery. I have a list of questions I want to ask the doctor. Since the tumor hasn’t grown in the past 3 months it came as a surprise that instead of continuing to monitor it. Surgery is an option and I could still choose not to have it after having the last mri the day before. At this point still trying to adjust to this news.

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I can relate i have a spot don’t know if cancerous or. Not bc I guess they don’t know until either biopsy is done or taken out . All they feel confident about now is bc I’d didn’t enhance not a grade 3 or 4 . My charlotte doctor says watch and wait and duke surgeon said take it out . I am conflicted bc how do they know it will grow and not just stay . Very conflicted and scared about brain surgery . Right now it is only 8.9 mm and hasn’t caused symptoms and is on right temperal lobe but still trying to figure out why it can’t just be benign and always assuming cancer ?

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@ashley5423

I can relate i have a spot don’t know if cancerous or. Not bc I guess they don’t know until either biopsy is done or taken out . All they feel confident about now is bc I’d didn’t enhance not a grade 3 or 4 . My charlotte doctor says watch and wait and duke surgeon said take it out . I am conflicted bc how do they know it will grow and not just stay . Very conflicted and scared about brain surgery . Right now it is only 8.9 mm and hasn’t caused symptoms and is on right temperal lobe but still trying to figure out why it can’t just be benign and always assuming cancer ?

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You should not worry too much. Many people have a meningioma for years. It is too small. Just it needs to be checked to see it it grows. you don't have any side effect. It is a good sign.

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@ginette55

You should not worry too much. Many people have a meningioma for years. It is too small. Just it needs to be checked to see it it grows. you don't have any side effect. It is a good sign.

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I am one of 9 children. 7 children died of cancer within 6 months of diagnosis. Some were stable types. Moral: Get a surgeon that does them all day. Eat and sleep well and have the surgery as soon as possible. don't depend on a book answer. Listen to your body and go on your own instincts

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@bill54321

I am one of 9 children. 7 children died of cancer within 6 months of diagnosis. Some were stable types. Moral: Get a surgeon that does them all day. Eat and sleep well and have the surgery as soon as possible. don't depend on a book answer. Listen to your body and go on your own instincts

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@bill54321 - wow, that is surely a lot of deaths in the same immediate family. How devastating.

Since the main emphasis of this discussion is on low-grade glioma, are you talking about glioma diagnoses in your siblings? Other diagnoses? Also, how would you say one might be sure of their own instincts as far as what treatment direction to pursue?

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@ginette55

You should not worry too much. Many people have a meningioma for years. It is too small. Just it needs to be checked to see it it grows. you don't have any side effect. It is a good sign.

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Thank you. That's what my neurologist told me.

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@bill54321

I am one of 9 children. 7 children died of cancer within 6 months of diagnosis. Some were stable types. Moral: Get a surgeon that does them all day. Eat and sleep well and have the surgery as soon as possible. don't depend on a book answer. Listen to your body and go on your own instincts

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THANK YOU

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Make sure you are educated properly

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@ashley5423

I can relate i have a spot don’t know if cancerous or. Not bc I guess they don’t know until either biopsy is done or taken out . All they feel confident about now is bc I’d didn’t enhance not a grade 3 or 4 . My charlotte doctor says watch and wait and duke surgeon said take it out . I am conflicted bc how do they know it will grow and not just stay . Very conflicted and scared about brain surgery . Right now it is only 8.9 mm and hasn’t caused symptoms and is on right temperal lobe but still trying to figure out why it can’t just be benign and always assuming cancer ?

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if it is any help, I have decided to go through surgery 3/18. Hearing that surgery is an option was quite a surprise but after I put my head around that, it feels like I will at least know what is going on in there. The thought of having MRI’s every 3 months is stressful as well. I do have a lot of confidence in my surgeon from Mayo. He has a lot of experience. His nurse has been very good at explaining what will happen and about recovery. After going through breast cancer 9 years ago with some very strong chemo for 5 months, this sounds easier than that. Best wishes in your decision.

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