I am very excited to be participating in the 2020 Strides for Stripes Zebra Walk Across America. Every stride we take is a step in the right direction to improving the lives of thousands who suffer from Neuroendocrine Cancer (NET).
Please help by sponsoring me. Together we will make a difference.
I was diagnosed in November 2018 with this incurable, but treatable Metastatic Carcinoid Neuroendocrine Tumor (NET). I started having razor sharp pains on the right side of my stomach, facial flushing, extreme fatigue, sweating and diarrhea on a regular basis, known as (carcinoid syndrome). As a result of numerous doctor’s opinions and series of tests, it was determined that I had some abnormal cancer cells in my abdominal region. To hear those words and continuously have to go to so many different medical specialists was just gut wrenching. I feel you should be able to go to a doctor get a test and your diagnosis be confirmed. This is not the case with Neuroendocrine Cancer. It is extremely difficult to diagnose. I couldn’t explain it because I didn’t know enough about it.
The tumor started in my small intestine. It metastasized to my ovaries and lymph nodes. In January of 2019, I had Small Bowel Resection surgery removing 12 cm of my intestines, in addition to my ovaries and a lymph node. Despite the persistence of active cells, it has not metastasized any further since my last CT scan. My ongoing treatment includes a CT scan done every 3 months, as well as Sandostatin treatments every 28 days for the rest of my life. This treatment is managing and keeping things stable.
This is a slow growing (well-differentiated), very complexed, misunderstood and unpredictable cancer. Well-differentiated cancer cells look more like normal cells under a microscope and tend to grow and spread slowly. I know more now than I did back then and have learned to accept this journey. It was so overwhelming and frustrating to learn that you have a disease that no one has ever heard of. There are still some medical professionals that look at me puzzled when I say Neuroendocrine Tumor. This rare cancer can often go undetected for years, delaying treatment. The good news is that it CAN be treated. The bad news is that there are physicians that are unfamiliar with it and overlooking it. You can have this from five to ten years prior to getting it diagnosed. That’s the scary part because by that time it is usually at an advanced stage. NETs are an unusual set of malignances that affect patients of all ages, races and backgrounds. These tumors are very difficult to diagnose and can cause many unusual symptoms which lead to improper diagnoses such as; Irritable Bowel Syndrome, Acid Reflux, Anxiety, Rosacea, Bronchitis, and Menopause. All of which I had been diagnosed with over the years starting around 2008.
In medical school, students are taught “If you hear hoof beats, look for a horse, not a zebra”. If physicians aren’t looking for the common, they will overlook the uncommon. This is often why NET’s won’t be found or treated. There is a serious need for funding for more research, educating and communicating the severity of this rare unknown cancer to our community.
My strong belief in God and refusal to give up is what keeps me going each and every day.
Many thanks to the Neuroendocrine Cancer Awareness Network (NCAN) and Zebra Warriors for the guidance, knowledge and support that I’ve received.