Dear Jack
Foundation

Julianne

Active LifeList Participant

I was 34 at the time of my diagnosis in 2022. A CT scan revealed that I had a tumor the size of a small orange between my aorta and pulmonary artery in my heart. The tumor appeared to be paraganglioma, which is a very rare neuroendocrine cancer. My geneticist had sent me a follow-up genetic test result that said I have a gene for paraganglioma. I had taken the genetic test because my mother had passed away from Stage IV Ovarian Cancer when I was in high school. I waited an entire year from when the geneticist told me to actually get screened because I thought there was no way I could have cancer at my age.

I joined the paraganglioma lifetime research study with the National Institutes of Health (NIH) and am now helping others with this disease. I had an open-heart surgery with 3 cardiac surgeons, which took 8 hours, on February 1, 2023. Doctors formally diagnosed me with paraganglioma since they had tissue samples. My cancer turned out to be metastatic. It had metastasized to a lymph node and trachea. The doctors were able to remove it from my lymph node, but not from my trachea.
The tumor in my trachea cannot be operated on at the moment. I was told by my oncologist in 2024 that I will never be cancer free. He said my type of cancer is like whack-a-mole since a new tumor can pop up any time. I am continuing to live my life to the fullest despite my circumstances!

Julianne’s LifeList:

  1. A trip

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