When most people are told they have a tumor, they only have to deal with one type; which is hard enough. Somehow, I drew the short stick in the lottery of health and have to deal with three tumors.
Carney Triad is an extremely rare syndrome that involves three very rare tumors: Pediatric/Wild Type Gastrointestinal Stromal Tumors (GIST), Pulmonary Chondromas, and Functioning Paragangliomas (also known as extra-adrenal Pheochromocytomas.)
To-date, only 140 or so people have been diagnosed with Carney Triad. Of those 140, 35 at most have ever acquired all three types of tumors within their lifespan. Last year, I was diagnosed with the third tumor, making me one of the 35. The genetic link is still unknown, the cure is unknown, a chemo treatment that works is also yet unknown.
I was 16 when the first tumor (pheochromocytoma) appeared, 17 when the second tumor (GIST) came around and 28 years old when a pulmonary chondroma appeared. So far, I’ve lost 1/3 of my stomach, and my left adrenal gland. At age 25, I had open-heart surgery to remove a paraganglioma that was attached and eating into the pulmonary artery, and sometime this year I face losing half of my left lung to remove the newest tumor, the pulmonary chondroma.
I am now 29, a wife and mother of a beautiful four-year old boy and living my life to the fullest. The last five years of my life, I have learned to cope with my diagnoses by focusing on patient advocacy. While there are no support groups specifically for Carney Triad, there are groups for GIST and Pheo/Para.
Today, I am the editor-in-chief of the PheoParaTroopers newsletter, and I support many GIST organizations including the LifeRaftGroup.org and GistSupport.org. I also speak at symposiums and help admin support groups on Facebook.
I have hope that awareness surrounding Carney Triad and affective treatments will be widespread about Carney Triad. Yet, until then, my goal is to spread the word about these rare tumors, as well as help those diagnosed along the way.
More of Erin’s personal story can be read here.