Not an easy diagnosis....

It wasn't easy to get the diagnosis, and when I finally did, it wasn't easy to understand how it would impact my life for over two decades (and still counting!)

It all started because I have a family history of breast cancer. I felt it was important to get an early mammogram. In those days, insurance didn't pay for mammograms before a specific age, so I paid out of pocket. And, then the first of the bad news came: a "concerning" nodule. Then, more bad news: a needle biopsy which as "inconclusive". Next, there was a lumpectomy. Then, at last, the good news: Not breast cancer, but instead a non-malignant tumor. No further action needed.

"Great news!" I thought as I went on with my life, until.....one day, I felt a hard, painful lump very near the "non-malignant tumor" location. As it continued to grow and become increasingly painful, I spoke about it with several different doctors; each seemed unconcerned. Finally, my gynecologist suggested I consult with a surgeon. By happenstance, the surgeon who was available was an oncology surgeon. And, also, by happenstance, he had recently attended a Continuing Medical Education (CME) course on neuroendocrine cancer. Finally, through the very knowledgable and caring surgeon, in 2001, I learned I had neuroendocrine cancer. In short order, through additional tests, it was determined that the neuroendocrine cancer had metastasized and that surgery should be scheduled.

Back then, I did not know one single soul who had neuroendocrine cancer. I didn't realize the symptoms I had been experiencing were part of neuroendocrine cancer. The internet was not yet a viable tool at the time of my diagnosis--if not in its infancy, the internet was certainly not more than a toddler. And speaking of toddlers, back in 2001, I was the mother of one toddler and one five year old child. For them, I was determined to do keep moving forward. I was a zebra who had zigzagged around the hyenas toward an accurate diagnosis, and I quickly became a zebra who kicked and bit the lions of multiple surgeries and clinical trials. And, sadly, I sometimes still have to zigzag past some churlish cheetahs who refuse to consider that zebras are real.

It's hard for me to believe it's been over 22 years since the day when I first heard the words, "You have neuroendocrine cancer." If you, too, have heard those words, please remember that each one of us has the ability to be a zebra, in our own way!