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

Posted by spudlk @spudlk, Jan 1 7:10am

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?

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.

Liked by Lisa Lucier, annekat

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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.

Liked by annekat

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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

Liked by spudlk

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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.

Liked by Lisa Lucier

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

Liked by spudlk

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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 .

Liked by Lisa Lucier

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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.

Liked by spudlk

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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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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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