My Tumors Were Not Benign: Inherited SDHB Mutation

January 31, 2015

My childhood was splattered with “Dad has cancer.” Dad’s first tumor was found the year I was born in 1958. He died the summer I turned 16 years old of paragangliomas that had spread throughout his body from spine to brain. His only sister, my aunt Ann, also died of paragangliomas. Dad had been “Head of Publications and Foreign Relations at Walt Disney.”

He wrote comic books and travelled the world promoting Disney characters including the comic book character he created, “Super Goof.”

In 2008, a few months after I turned 50, a tumor with a bleeding ulcer on it was discovered in my stomach. I’d been having extreme weakness and had stopped eating. This surgery took the bottom 1/3rd of my stomach. I was told the tumor was “benign.” My father died of “benign” tumors. I wasn’t about to sit still with a misdiagnosis. I spent months researching why father had paraganglioma tumors (NETs) while I had pediatric-like Gist (sarcoma). My DNA diagnosis was SDHB and links the two cancers. I had inherited father’s cancer.

In 2012, 2/3rds of my liver was removed (it grew back within four months). I wrote a book about my story that was published, “A Disney Childhood: Comic Books to Sailing Ships.” My tumors are still growing. I’ve got a third set of mets next to my right kidney. No known treatment for these tumors except for surgery . . . If surgery is possible. I’m looking for cures. There are about 40 known cases of SDHB deficient gist. Not a big pool to draw information or phase trials from. I am dedicated to pointing researchers to this cancer. Super Goof and I have a lot of work to do to find solutions to this inherited rare disease.

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