Dang! Sorry to hear the news. A 2nd opinion is definitely prudent, especially with a rare cancer. Once you have the scan done, ask for your medical records and tests results.
When I contacted Johns Hopkins, they were beyond helpful, even helping to acquire some of my test results. After my initial contact I was put in contact directly with the head of the Sidney Kimmel Cancer Center and she arranged everything. You have time. Contact them or another CCC and explain your situation/diagnosis and that you want a 2nd opinion. Information and knowledge of your cancer is your best ally.
Here is a list of cancer hospital ratings
http://health.usnews.com/best-hospitals/rankings/cancerPositive thoughts and prayers
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