Second Opinion

We have been asked by multiple people if we have gotten a second opinion.  I thought it was a little odd at this stage.  I mean radiation-check, surgery-check, chemo-on the way.  What else is there to get an opinion about?  I realize there are clinical trials to look into, but chemo is a solid move at this point.  Before Evan began radiation treatment we had contemplated getting a second opinion closer to home in Wilmington, but the cancer center did not have a neuro oncologist.  Then, we found out there was development with his astrocytoma so we needed to begin radiation as soon as possible. 

When I called the American Brain Tumor Association the first question asked was about the diagnosis and the second was if we had gotten a second opinion.  My husband is comfortable with his doctors and has always felt confident in their decisions.  I support and respect that, but as chemo treatment is about to begin I have gotten emotional and worried and anxious.  Now I feel that a second opinion would be a benefit, even if it is confirmation that we are on the right path.  Evan has been back and forth with pain and pressure behind his eyes since his shunt surgery and with chemo around the corner…I suppose I just need to make sure we are doing EVERYTHING we can to fight this.  

Evan had just gotten done throwing up yesterday and I simply said, Ev I received a list of top tier hospitals from the brain tumor association and I think we should look into them and get a second opinion.  I was expecting to bear my soul and explain that if something happened to him I had to make sure we did everything possible.  He simply agreed and laid back down. 

We are going to be moving by the end of September, that’s when our lease runs out.  I want to move as little as possible.  It’s a hassle.  Addi is more aware of what’s going on and I don’t want to move her around all the time and with Evan’s health we simply aren’t going to be able to do it.  With the help of my amazingly gifted sister I have some pros for the top tiered hospitals to treat brain tumors.  Here is the list and info from the ABTA

List of Brain Tumor Institutions

Thank you for reaching out to American Brain Tumor Association.  While we do not recommend individual physicians, we suggest looking for a neurologist by consulting with one of the following institutions:

These facilities are considered top tier as they offer a team based approach with the following: a neurosurgery, neuro oncology, radiation oncology, and support staff of specialty nurses and social workers.  These facilities are also considered top tier if they participate in clinical trials. These facilities will also have a tumor board that meets regularly.
 
The top institutions who meet this criteria include:
Memorial Sloan Kettering
Columbia University
MD Anderson
UCSF
UCLA
Barrows Neurological Institute in Phoenix
Duke
Mayo Clinic
Dana Farber Institute
Johns Hopkins
Northwestern
University of Chicago
Cleveland Clinic
Massachusetts General Hospital
Ohio State University
Washington Hospital Barnes-Jewish.
 
The next tier of institutions have a neuro oncology specialty that are good and may be less comprehensive:
University of Washington
University of Alabama
University of Cincinnati
Rush University
University of Colorado
University of Utah
University of Michigan
University of Pittsburgh
University of Pennsylvania
UCSD
UC Irvine
Dartmouth
University Hospital in Cleveland
Moffitt Cancer Center
Mayo Jacksonville.

Now, something I have mentioned before if medical marijuana so that is a criteria for the state we move to.  There is research out there that proves marijuana can help treat and kill {brain} cancer cells.  Again, I want to make sure we have tried everything so medical marijuana is a criteria for the move.  Have you had any experiences with the hospitals listed above?  Any recommendations?  We are going to book a trip to visit one of the hospitals listed above and would love some input…

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