Watching a Meningioma Brain Tumor

Posted by robinem @robinem, Feb 8, 2018

I’ve just been diagnosed with a 2cm meningioma tumor on the right front of my head. I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting?

@ees1

Thank you. And you. It’s an awful road. Just got back from Mayo. Dr. was excellent, kind, just wonderful. No change in two years. Been there a very long time. Just hoping it stays put.

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Did you go to Mayo on your own or were you referred? I’m considering going on my own.

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@donald1214

Did you go to Mayo on your own or were you referred? I’m considering going on my own.

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Yesterday saw my doctor Mrugala. Such a neat fellow. We are fighting my tumor with Advastin.

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@donald1214

Did you go to Mayo on your own or were you referred? I’m considering going on my own.

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I went to Mayo on my own. I called them myself and asked for the neurosurgery dept. They gave me an appointment for the very next week and arranged all of my appointments for me. On my first trip there, I saw the director of neuro oncology, a neurosurgeon and a radiation oncologist. Truly a team effort there. I was extremely impressed. If you go to Mayo in Rochester, my neurosurgeon is Terry Burns. He recommended I have gamma knife radiation on my recurrences and did it for me. I like him a lot. I use him now each year to review my annual MRI's. Best wishes. Keep us informed on your progress. Jill

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Have you had a second opinion from another doctor? Can you tell me the size of your meningioma? I wonder if your doctor has diagnosed it as benign because of the size that it has gotten to without causing any problems that you know of. When they are benign, they grow very slowly, as I'm sure you already know. However, if it were me, I would feel more comfortable with a second opinion. When I had a recurrence in 2017, I went to two well respected neurosurgeons where I live. They each recommended a slightly different treatment. That's why I called and went to Mayo. One recommended a surgical biopsy on one recurrence and cyber knife on the other which was very elongated. The other doctor recommended gamma knife on both and said no biopsy was needed. I was confused and concerned about what to do. I chose the Rochester office of Mayo even though the FL office was closer because I had read Rochester did gamma knife, cyber knife and proton radiation. I hoped I was a candidate for one of them instead of another craniotomy and it turned out I was.

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@donald1214

Did you go to Mayo on your own or were you referred? I’m considering going on my own.

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I agree that the watch and wait treatment approach can be un-nerving. That's why it is so important to have a good relationship with your doctors and trust in their care and expertise. Personally, I prefer to call watch and wait "active surveillance" which puts the emphasis on watching and that something IS being done.

@donald1214, you can self-refer to Mayo Clinic. The expert leadership spans across all 3 campuses. I invite you to watch these 2 video Q&As with neurosurgeons from FL, AZ and MN campuses to get a feel for the doctors.

– #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting (2018) https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/
– #MayoClinicNeuroChat on Innovations in Neurosurgery (2017) https://connect.mayoclinic.org/webinar/facebook-live-mayoclinicneurochat-on-innovations-in-neurosurgery/

When you call at any of the 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

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@colleenyoung

I agree that the watch and wait treatment approach can be un-nerving. That's why it is so important to have a good relationship with your doctors and trust in their care and expertise. Personally, I prefer to call watch and wait "active surveillance" which puts the emphasis on watching and that something IS being done.

@donald1214, you can self-refer to Mayo Clinic. The expert leadership spans across all 3 campuses. I invite you to watch these 2 video Q&As with neurosurgeons from FL, AZ and MN campuses to get a feel for the doctors.

– #MayoClinicNeuroChat Live from American Association of Neurological Surgeons Annual Meeting (2018) https://connect.mayoclinic.org/webinar/mayoclinicneurochat-live-from-american-association-of-neurological-surgeons-annual-meeting/
– #MayoClinicNeuroChat on Innovations in Neurosurgery (2017) https://connect.mayoclinic.org/webinar/facebook-live-mayoclinicneurochat-on-innovations-in-neurosurgery/

When you call at any of the 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

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FYI: Oct 26 to Nov. 2, 2019 is International Brain Tumour Awareness Week!
Meningionas is the most common brain tumour – 37% of all tumours, benign & malignant are meningioma

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@gloriajean

FYI: Oct 26 to Nov. 2, 2019 is International Brain Tumour Awareness Week!
Meningionas is the most common brain tumour – 37% of all tumours, benign & malignant are meningioma

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colleen – how can my message be shared with others on this post

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@gloriajean

colleen – how can my message be shared with others on this post

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@gloriajean, your message about Brain Tumor Awareness week Oct 26 to Nov 2 was shared with all members participating in this discussion and all members following the Brain Tumor group.

Are you doing anything special for brain tumor awareness?

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