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Brianna Jackson’s is a cautionary tale. It’s a story of a rare cancer, one that affects only two to four people per million. It’s also a story of a young woman making choices based on her lack of health insurance. Fortunately for Brianna, the story has a happy ending, but for a woman so young, she’s been through a lot.
In December of 2012, Brianna, then 22, noticed a lump the size of a tennis ball on her abdomen. “It didn’t bother me, and since I didn’t have insurance, I didn’t bother to go to the doctor,” admitted Brianna. Although she was working full time in childcare, the $200 monthly cost of insurance was beyond her budget. “I was healthy – I figured I’d get it later, when I needed it.” Eventually, Brianna applied for health insurance and was approved.
By March, the mass had grown, and Brianna’s appetite had waned. “I began to feel scared something was wrong because all of a sudden, whenever I’d eat, I would vomit. It would come out of nowhere,” shared Brianna, who started losing weight. She finally went to her local emergency room, where a CAT Scan revealed a large mass 17 centimeters (approximately 19 inches) in diameter. Although desmoid tumors do not metastasize, they can grow aggressively, compressing vital organs and cause life threatening problems – or even death. Brianna agreed to have surgery the next day.
“I figured they’d take it out, and everything would go back to normal,” explained Brianna, whose doctor was not a specialist in soft tissue sarcoma, and just did a biopsy, which revealed the mass was malignant. That procedure seemed to jumpstart the tumor’s growth. "Because my abdomen protruded, I appeared to be nine months pregnant, even though I was skin and bones,” recalled Brianna, who, at 5’8”, weighed 120 pounds.
Brianna's doctor immediately referred her to Fox Chase Cancer Center.
Brianna's team included medical oncologist Sujana Movva, MD, a member of the sarcoma treatment team and surgical oncologist Jeffrey M. Farma, MD, FACS. "They immediately admitted me to the hospital and put me on TPN intravenous nutrition a few days later," Brianna recalled. Their plan was to shrink the tumor with chemotherapy before surgery. Unfortunately, the tumor did not respond to the treatment and continued to grow.
Brianna’s surgery was extremely complex and potentially dangerous, as she was at risk of her losing bowel function. At that point, Dr. Farma and Dr. Movva, decided she would get the best treatemnt at a center that specialized in small bowel transplants, such as University of Pittsburgh medical Center. Despite their recommendation, Brianna's insurance company initially denied this request. As a result, Dr. Farma and Dr. Movva spent countless hours on the phone appealing this decision until they finally convinved the insurance company and the procedure was ultimately approved.
On July 31, 2013, her Fox Chase team arranged for Brianna to travel to Pittsburgh where she met Guilherme Costa, MD, a transplant specialist at the University of Pittsburgh Medical Center. She underwent a nine hour procedure on August 6, in which Dr. Costa removed the tumor, one-third of her bowel, her spleen, pancreas, gall bladder and a portion of her stomach. “Emotionally it was a relief because I just wanted that thing out of me," shared Brianna. "I was so grateful to Dr. Farma and Dr. Movva for finding the best surgeon for my very rare cancer - and fighting with my insurance company for me to have the operation."
“Following the surgery, I had pain, but not an incredible amount,” admitted Brianna, who handled the surgery well. Brianna has been working to regain energy and moving ahead with her life, hoping to go back to school to earn a nursing degree. "This experience has been challenging for my family and my parents – but they were always there for me. Every night they’d look into my face and say, 'We’re going to get through this.' Not having insurance was a huge factor in this whole situation. I was afraid that I wouldn’t get the care I needed because of it, so I just kept putting off going to the doctor. It just got out of hand.”
"Dr. Farma was so concerned about me and took a personal interest in my family and me. I’m so very grateful."
After Brianna recovered from surgery, she returned to Philadelphia and to Dr. Farma and Dr. Movva at Fox Chase for her follow-up care. She is immensely grateful to Dr. Farma, Dr. Movva and the team at Fox Chase Cancer Center. “Without Dr. Farma, there would be no Dr. Costa. We didn’t have Pittsburgh on our radar at all. Dr. Farma was so concerned about me and took a personal interest in my family and me. I’m so very grateful.”