The skeptical cardiologist is aware of this awareness day because he has a NET cancer.
In 2013 I experienced progressive weakness and shortness of breath. Being a cardiologist, my first thought was that I had a cardiomyopathy. Near simultaneously, however, I began suspecting anemia. Testing confirmed a severe iron deficiency anemia.
Iron deficiency anemia in a person that doesn’t menstruate is almost always due to blood loss from the GI tract.
My oncologist, fortunately, was not satisfied with the unremarkable endoscopy of my upper and lower GI tracts and insisted on further testing, and ultimately exploratory surgery.
Eventually, I was diagnosed with carcinoid tumors of my small intestines.
Carcinoid, a type of neuroendocrine tumor (NET), is sufficiently rare that experts can usually not be found in your local community; I ended up finding an outstanding expert at the University of Iowa, Dr. Thomas Odorisio.
After advanced PET scanning detected additional tumor, I had more extensive surgery in the hands of a surgeon with broad experience and expertise in NET cancer surgery, Dr. James Howe.
I’m doing fine now, and I have started a blog for patients in the St. Louis area who have carcinoid/NET cancer. You can read it here
As you are all well aware, breast cancer has claimed the color pink; NET cancer has adopted zebra stripes.
From Carcinoid Cancer Foundation
“Why the zebra? The zebra is meant to encourage medical professionals to consider diagnoses beyond the most common ones: When you hear hoof beats, you may think it’s a horse, but sometimes it’s a ZEBRA, the rare and unexpected possibility. By deciding to Go Zebra-Striped, we all hope to help NET cancer patients receive correct diagnoses faster.
On November 10 each year, patients, families, advocates and medical professionals around the world unite to raise awareness for carcinoid/neuroendocrine cancer. These cancers are incorrectly diagnosed between 60% and 80% of the time, and it typically takes about five years for patients to receive a correct diagnosis. Often these misdiagnoses prevent patients from receiving the appropriate treatment.
To Go Zebra Striped, visit our Facebook page at www.facebook.com/carcinoid for the app to Go Zebra Striped (see apps in left-hand column or the Go Zebra Striped tab under the large photo at the top of the page). Or, to Go Zebra-Striped on other social media, follow this link and scroll down for instructions: http://www.carcinoid.ngo/
We’re excited to have you Go Zebra-Striped with us.”
2 thoughts on “Today Is NET Cancer Awareness Day: Bring Out Your Inner Zebra!”
I have had 4 different primary cancers prior to coming down with a pancreatic neuroendocrine tumor (lost left leg to osteosarcoma at age 14, stage 4 papillary thyroid cancer at age 58, basal cell carcinoma at age 62, chromophobe renal cell carcinoma at age 62.
In spite of 2 liquid biopsies showing positive for neuroendocrine tumor and 10 positive blood and urine tumor marker tests, multiple scans showing a growing cystic tumor on the head of the pancreas and symptoms of a somatostatinoma, including becoming a type 1 diabetic at age 63, I still haven’t been able to convince my doctors at two major regional teaching hospitals that I have a neuroendocrine tumor. Now I’ve just come down with iron deficiency anemia. Now that my body is breaking down due to the cancer, I suspect I’ll finally be able to convince them when jaundice due to the lesion in the liver shows up.
The medical community doesn’t believe that zebras exist medically unless someone else finds one and they write a paper about it. But the patient in front of them can’t have a neuroendocrine tumor because they are so rare.
Tom, age 66
My oldest son died of a rare sarcoma cancer. I will put your cancer foundation in my support. Our society needs to support all types of cancer. Some are little known about and need the research done to cure them.