“As an active duty Air Force member, I was concerned that I would not be able to continue serving in a career that I am extremely passionate about and able to do, despite my rare disease.”
For over a year I had felt a lump in the side of my neck. I went to my primary care physician multiple times but unfortunately it was misdiagnosed. While I was deployed, I had complications that ultimately led to a medical evacuation from my deployed location to Germany. After almost two months, I was diagnosed with bilateral carotid body tumors. I had my first tumor removed in 2018 and my second in 2020. When I was first diagnosed with these paragangliomas, I was told it wasn’t cancer, they rarely ever came back, and not to worry but to continue annual scans just in case.
In 2023, a surgical oncologist recommended I start getting DOTATATE PET scans. This is when my world turned upside down. My scan came back with metastatic paragangliomas, spread across my body from my lung to my femur, on my spine and in lymph nodes. I wasn’t prepared to hear this as I hadn’t ever really thought it was a possibility. I couldn’t help but fear what life would be in the future for my young daughter and husband. After coming to terms with my new diagnosis, I quickly went to the Internet to start looking for answers and options. My team of oncologists had not encountered a case like mine previously and were also searching for answers.
Through a Facebook support group, I discovered an ongoing research trial at the National Institute of Health utilizing Lanreotide. Additionally, there was an upcoming provider-patient conference about pheo and para tumors. Both of these were incredibly invaluable to me and gave me the greatest gift of all: hope!
As an active duty Air Force member, I was concerned that I would not be able to continue serving in a career that I am extremely passionate about and able to do, despite my rare disease. It was very difficult to advocate for myself due to the complexities of para, the unknowns surrounding it and the general lack of understanding regarding my current condition. I had to advocate for myself and navigate the military healthcare system to see a number of specialists across multiple states while I was going through a medical evaluation on my ability to consider serving in the military. After seeing an open letter from a member of Congress who is currently receiving Lanreotide to battle his NETs, I knew I had to find ways to share my story to help others in the same situation.
By sharing the difficulties I am encountering and the struggles I will continue to face due to my diagnosis, I hope that I can help someone find the courage and strength that they need to advocate for themselves. Or just simply to know that they aren’t alone in this journey. It can be frightening with so many unknowns and uncertainty but I refuse to allow it to define how I live my life. While some days are harder than others, I wake up every day ready to enjoy life, make precious memories with my family, and continue serving in the defense of my nation.