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    Posted January 22, 2014 by
    Frisco, Texas
    This iReport is part of an assignment:
    Living with a rare disease?

    1 in 1 Million - Being Uncommon

    On September 10, 2010, at the age of 35, I was diagnosed with a very rare type of head and spinal bone cancer called Chordoma.
    Chordoma is part of a family of cancers called sarcoma, which include cancers of the bones, cartilage, muscles and other connective tissue. Chordomas are thought to arise from remnants of the embryonic notochord, a rod-shaped, cartilage-like structure that serves as a scaffold for the formation of the spinal column. Notochord cells normally persist after birth lodged inside the spine and skull, and rarely these cells can undergo a malignant transformation that leads to the formation of a chordoma. Chordomas are generally slow growing, but are relentless and tend to recur after treatment. Because of their proximity to critical structures such as they spinal cord, brainstem, nerves and arteries, they are difficult to treat and require highly specialized care. Chordoma is also considered the orphan disease, occurring in just 1 in one million people, that’s only 300 cases a year in the United States.
    After the birth of my son, I started having daily migraines, stiff necks, and blurry vision. I just assumed that when I broke my coccyx during natural birth, it must have thrown the rest of my spine out of whack. I went to the doctor, tests were taken and so were scans. To my surprise, all my scans confirmed I had a tumor on my C2-C3 vertebra. After seeking several opinions, I made the decision to go ahead and get an open biopsy. I should have known something was wrong when the neurosurgeon came out of surgery and told my husband "I've never seen anything like it before." After weeks of waiting, I finally found out that the tumor was indeed malignant, but not just malignant, an extremely rare bone cancer called Chordoma. What was even more difficult is that there are only a few select doctors around the United States that treat this type of disease. Luckily for me, there was a very small group on the web called the Chordoma Foundation. I was able to learn so much about my disease and find out who are the expert doctors for Chordoma. I found a group of Doctors at Memorial Sloan Kettering Cancer Center who immediately put a treatment plan together for me. So I packed up my SUV, together with my husband, my 3 dogs and my new born baby, I drove 1,500 miles up to New York City from Frisco, Texas to meet with the experts and receive my treatment. This treatment was in its clinical trial stage. I was only patient number 10 to receive this new Chordoma treatment. My treatment was complete on October 28, 2010, which included a session of high dose radiation giving me 2,400 gy (a normal person receives up to 21 gy per sitting.) I received the most amount of radiation any human being can possibly have. The theory behind this clinical trial was that Chordoma is a very strong and aggressive cancer that does not respond to traditional radiation or chemotherapy. But by shooting that amount of radiation into the tumor, the hope is that it has no time to react or become immune. Three years later, my tumor is stable and has not grown, however, it has been deemed inoperable. Those who do have the surgeries have several complications. Even with just the radiation treatment, I now suffer from fibrosis, degenerative discs, damaged nerves, memory loss, migraines, constant pain, and weakness. But I am still persevering…for my boy. I refused to be defined by this rare disease. Yes, I am Uncommon, but I am also a Warrior and I am not going to be another statistic for this disease. Now, with the Chordoma Foundation, the only foundation dedicated to finding a cure for Chordoma, I am hopeful that we can find a cure or a treatment for our cancer. The Founder and Executive Director, Josh Sommers is a Chordoma Champion himself, so he can relate to us. We do not call ourselves survivors, because recurrence of our cancer is extremely high and often, which is why we are Champions…constantly battling this rare disease. If you would like to learn more about our uncommon disease, please feel free to visit The Chordoma Foundation at www.chordomafoundation.org
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