On June 26th, 2012, our lives were changed forever when my partner had a seizure (first ever) sitting behind the wheel of her patrol car at work. Since then, we've been on a rollercoaster ride that has taken us all over the place. As of yesterday, July 20th, we've been told that she has a Grade II Astrocytoma in her right temporal lobe.
At first we were referred to a Neurologist with ECU Neurology in Greenville, NC, where we live. He looked at the MRI and said he could see the tumor. He wanted to go in with surgery & biopsy in 2 weeks to remove the tumor.
We decided to seek out a 2nd opinion before going forward with anything and were able to see Dr. Allan Friedman at Duke. He met with us and said to him it looked diffuse and wanted another MRI to see if he could get a better look at it. That MRI was also somewhat inconclusive, due to swelling, so he suggested a biopsy. She had a mapping MRI done pre surgery on 07/11/12 and the steriotactic biopsy was done the following day. Those results are the ones we recieved yesterday (07/20/12), showing the Grade II Astrocytoma in her right temporal lobe.
When Dr. Friedman's office called with the biopsy results, his nurse told my partner that typically someone with a tumor like hers is monitored with MRI scans every other month or so unless there's new growth or change. She also stated that chemo would not typically be used on a tumor like hers. We don't, however, know what treatments will be used when & if there is growth or change detected. We also don't yet know how long the monitoring would go on before other treatment would be offered.
I'm having a hard time with this 6 week thing. To me, the love of my life has a tumor in her head & we're waiting for a follow up to see what we are going to do about it? I hate to sound impatient, but why six weeks? I had tests done on my gallbladder last year, and was able to get a follow up in about a week to discuss the results and our plan of action. Dr. Friedman's nurse did tell my partner over the phone, the day after her biopsy that if the pathology shows a low grade tumor, she would have a follow up appointment in about 6 weeks. This makes me wonder if 6 weeks is normal protocol, or are we "slipping through the cracks"?
We were told that as the tumor is diffuse, it acts like tree roots in soil. Surgery is difficult in this case, and they probably wouldn't be able to get it all. The pathology results also showed "well differentiated" and our primary care physician seems to think surgery to remove some of it is a possibility. That is also the opinion of the first neurosurgeon we talked with at ECU. So what do we do? Just leave it? Wait for more seizures, and all the other symptoms that come along with having a brain tumor?
We have done our research, and have read about treatment options. Surgery, chemo, radiation.... all the new research going on at these brain tumor centers.... and we're just going to wait? My partner seems okay with the 6 week follow up appointment but for me, that's almost 3 months to the day that she had the seizure and I worry that we're wasting precious time just waiting. Sorry for typing so much but I just want to be sure that we're doing what's best for her and the waiting is driving me crazy.
Has anyone else had this issue? We could really use some advice right now. Thanks for reading.