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Watching a Meningioma Brain Tumor
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?
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Benign left frontal convexity/parasagittal here. Wait and watch. It’s unnerving. Calcified, also.
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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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1 ReactionI had a right frontal lobe meningioma in 2001. Because of the size of mine (5cm, about the size of a small orange) I was also told that it had probably been there for at least 20 years. I found out about mine by having a grand mal seizure out of the blue. Because it caused a seizure and because there was no way to know if it was benign without surgery, I had mine surgically removed. Fortunately it was benign. I had two small recurrences in 2017 and had gamma knife radiation on them at Mayo in Rochester. How did your doctor know it was benign? Did you have a surgical biopsy?
No biopsy and none was recommended. That’s kind of why I’m still uncomfortable of the diagnosis and the wait and watch. I’ve also been diagnosed with myoclonus that the neurosurgeon says has no connection. And also a nodule on adrenal gland, which I’m having tests run on as we speak. Seems awfully coincidental that all this crops up at once. That’s why I’m considering going to Mayo.
Did you go to Mayo on your own or were you referred? I’m considering going on my own.
Yesterday saw my doctor Mrugala. Such a neat fellow. We are fighting my tumor with Advastin.
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
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.
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.