Living with a Desmoid Tumor

About a year ago, Casey started experiencing the all too common symptoms of acid reflux, also known as heartburn. Married to her college sweetheart, Jeff, and mother to a 3-year-old, Casey says she knew something just wasn't right in her body. A few visits to the doctor's office later, and Casey had learned that she was pregnant and had a large soft tissue tumor, known as a desmoid tumor, growing in her abdomen. The tumor became intertwined with an artery that provided blood supply to her bowel and the placenta of the growing fetus, causing the mass to grow significantly larger. Casey and her husband then made the difficult decision to end the pregnancy and start fighting the inoperable tumor.

Desmoid Tumors Explained

Dr. Neeta Somaiah of the Sarcoma Medical Oncology Center explains how a desmoid tumor develops and the potential health risks they pose.

"I was blown away at first, but you know you're still a mom, and you're still a wife, so you need to be there for both of them," Casey says. "So, you need to do what the doctor's telling you that you need to do, in order to save your own life."

Desmoid tumors, also known as aggressive fibromatosis, are soft-tissue tumors that arise from connective tissue. They usually present as a solitary, slow-growing mass, and can usually be found in the arms, legs, abdomen or chest. This type of tumor is also quite rare, with approximately 900 new cases diagnosed each year in the U.S. Surgery is usually the best way to remove desmoid tumors, however in Casey's case, the tumor is wrapped around her mesentary artery, which supplies blood to the small and large intestines, and surgery is too dangerous.

"Though it appears benign in histology and lacks the ability to metastasize — that is, spread to other organs — it can be very aggressive locally," explains Dr. Somaiah, Casey's doctor. "It can invade vital organs. It can cut off blood supply. It can grow pretty big and cause pain, and it also has the tendency to recur repeatedly."

Casey has since undergone six rounds of chemotherapy and says that the tumor has slowly shrunk to the size of a grapefruit from its original watermelon-like size. She continues to be active, playing tennis with her husband, and says she feels fantastic and that life has slowly but surely gotten back to normal, minus that fact that the tumor is still in her stomach.

ER physician Dr. Travis Stork says that an important takeaway from Casey's story is to trust your instincts. "We know our bodies," he says. "So my doctor's orders ... always, always listen to your body."

Click here to learn more about desmoid tumors or donate to further research.

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