Young desmoid tumor survivor gets life back with 17-hour surgery
On the back of Alicia Bennett’s favorite T-shirt is her design of a tree with the words, “Go out on a limb.”
The shirt honors the 17-hour cancer operation that removed the 23-year-old college student’s watermelon-sized tumor, along with her right arm and breast, chest wall, sternum and six ribs.
“I use lots of humor to cope,” says Alicia, who has been coping with a desmoid tumor – a type of soft tissue sarcoma – since she was 16.
Repeated desmoid tumor recurrences
Alicia’s local New Hampshire doctor first diagnosed her with a benign, slow-growing tumor near her right arm pit in 2010. Because it wasn’t life-threatening, the busy teenager didn’t worry about it. But six months later, the tumor had grown to the size of an apple. So, she had surgery on Nov. 25, 2010, in Massachusetts, to remove it.
Less than a year later, doctors discovered three golf-ball sized tumors in different spots on the right side of her body. Alicia had surgery again, followed by 25 days of radiation therapy.
“At this point, my doctors were certain the tumors wouldn’t come back,” says Alicia, who then moved to Texas to attend Texas A&M University in College Station.
Finding MD Anderson and a desmoid tumor diagnosis
During her first semester, Alicia felt another lump. “I totally broke down,” she says.
When she returned to New Hampshire for Christmas break, her doctor started her on the drugs Sulindac and Tamoxifen for one month. They didn’t shrink the tumor.
Frustrated, she returned to Texas, where she met another young cancer patient. He told her to go to MD Anderson. Alicia completed an online self-referral and had her first appointment on Feb. 25, 2013.
Under the care of MD Anderson medical oncologist Anthony Conley, M.D., she learned she had a desmoid tumor. “With the right diagnosis, I felt like I was finally going to get the right treatment,” Alicia says.
Alicia tried another chemotherapy drug, but it didn’t kill the cancer either. Scans showed a cantaloupe-sized tumor on her chest and invading her right breast and arm. She then tried several clinical trials, but nothing worked. “I was being crushed by the tumor,” Alicia says. “It was heavy, painful and debilitating.”
Opting for surgery
In March 2016, Alicia stopped the clinical trials and took time off from school.
“Surgically removing sarcomas like Alicia’s often requires a team of surgical specialists,” Cormier says. Alicia’s tumor extended to her cervical spine, wrapped around several ribs, replaced her breast and extended into her arm tissue. To attempt a complete removal of the tumor would require a team of five surgical specialties and leave Alicia disabled. But it was the only option.
“At first, I said no way. I am not going to have my arm chopped off,” Alicia says. She sat in the MD Anderson parking lot and cried.
Two months later, she changed her mind. “I couldn’t deal with my tumor any longer,” Alicia says. “I’m young, and I don’t want to be sick for the rest of my life.”