March 3: Final Pathology

It was not super surprising to me when I saw that I missed a call from MN.  The follow up had been pretty significant the week following surgery. It was nice to hear the friendly voice of Dr Cassivi, what wasnt nice was what that voice was saying.

By this point anyone reading this blog has either been through it with real time texts and updates or have read the other posts......if not let me summarize.....Got sick on cruise, thought it was sea sickness, it turns out it was sodium dropping. Diagnosed with SIADH, couldnt regulate sodium in Virginia Beach despite efforts and looking for underlying cause so we decided to go to Mayo clinic to get shit done! They did find the cause of SIADH which was a tumor in my chest. It was an exceedingly rare neuroendocrine thymic carcinoid (benign cancer) that was attached to the protective layer of my heart. The tumor was removed and my sodium stabilized and has beeen normal ever since.  

The final pathology came back as a more aggressive cancer then initially thought. It was identified as a stage 1 primary neuroendocrine Thymic small cell carcinoma, not a benign carcinoid. Dr. Cassivi suggested that moving forward we would need to go back to Mayo for a follow up and add more to my team. He had just received the final report the night before and had been in touch with pathology, radiology, oncology and endocrinology. They would be actively collaborating on creating a plan. He was reassuring that although this made my diagnosis go  from what he called “green light situation to yellow” that this was something that was caught early and that he expects it to just be another great part of my story!

Later that day medical oncology called to schedule appointments with them, radiation oncology, endocrinology, PET scans, labs, Chest x-ray, and follow up with Dr Cassivi. Another long story short first available to have everyone see me in a timely manor was end of April..... the next day I received another phone call from Dr. Cassivi  assuring me that this would be done sooner- and it was- March 23 and 24.  So off to MN we go!

Zebra is the symbol
Of Neuroendocrine and rare cancers 

The ZEBRA logo, or mascot, was originally designed in 2003 by the Carcinoid Cancer Awareness Network (CCAN), now known as the Neuroendocrine Cancer Awareness Network (NCAN). This is, perhaps, why many refer to us as “The Original ZEBRA.” According to The National Geographic Society, the zebra has the most unique coat of all animals. And each individual zebra has its own striped pattern, as unique to it as fingerprints are to humans. In fact, no two are exactly alike. Just like NET patients. No two NET Cancer patients are the same.