23-year-old Fights for Her Life with Rare Sarcoma Battle

August 12, 2021

When waking up one morning in April 2020, 23-year-old Zulema Rubio, a recent college graduate and legal assistant, experienced swollenness in her face. She attributed it to too much salt and not enough exercise during the COVID-19 pandemic. However after realizing her lymph nodes were hard to touch, she decided to make a trip to urgent care. That quickly landed her in the emergency room at Hackensack University Medical Center where doctors discovered a tumor.

Doctors at first suspected that Zulema had lymphoma. But in July, she was officially diagnosed with intimal sarcoma, an extremely rare type of malignant tumor, which mimics pulmonary thromboembolism. Her condition was impacting blood flowing from her face and brain to her heart.

Zulema was sent to Andrew Pecora, M.D., an expert in blood and marrow stem cell transplantation, cellular medicine and immunology research at Hackensack’s John Theurer Cancer Center.

“When I met Zulema, I was afraid for her. Here was this beautiful, young woman, and her veins and face were swollen,” Dr. Pecora says. “Once I received the tissue diagnosis, I knew there was a very limited chance I could help her.”

Uncertainty and Hope

Zulema’s journey was one that not many 23-year-olds will face.

“I was in the hospital receiving ongoing chemo for 24 hours straight, four days in a row, every two weeks,” Zulema says.

Chemotherapy was followed by more chemotherapy, targeted therapy and immunotherapy. She then underwent radiation every day for six weeks and was finally ready for surgery.

The procedure required open heart surgery and would be complicated. The cancer was in her superior vena cava, a major vein in the upper body that carries blood from the head, neck, upper chest and arms to the heart. In order to be successful, doctors had to take out part of this vein and put in tubing to allow blood to flow through.

“Zulema’s case was technically challenging, and not many centers would have been able to attempt it,” says Nabil Rizk, M.D., Zulema’s thoracic surgeon and a key part of her multidisciplinary team, along with cardiothoracic surgeon George Batsides, M.D., and radiation oncology specialist Anthony Ingenito, M.D.

Adds Zulema: “I went in on March 24, 2021. The surgery took 14 hours. The first four hours were spent with doctors just trying to determine if it could be done.”

Her mom, Monique Jasso, recalls the uncertainty of it all, as the COVID-19 pandemic kept her from being with Zulema in the hospital.

“After four hours in surgery, doctors called me and said they would try,” recalls the tearful mom.

The next update Monique received was that the entire tumor was removed and Zulema would be OK. Today, she is cancer-free.

“We just cried and prayed and are so thankful,” adds Monique, who credits the “amazing” specialists from John Theurer Cancer Center, along with her daughter’s fighting spirit.

‘A Magical Coalition’

Dr. Pecora says the John Theurer Cancer Center is one of a few places in the country where the combined skills of the doctors needed were available to accomplish this procedure.

“This procedure was as complicated as you can get from a surgical side. We used all the tools in the toolbox from a cancer perspective,” he says. “The knowledge, skill and technical prowess that these doctors brought to achieve this, along with nurses and radiation therapists, were truly a magical coalition that came together to provide care she would not find many places in the country to achieve an incredible outcome.”

Zulema hopes her story will inspire others who have symptoms to not delay seeing a doctor. She also hopes her journey inspires others to persevere. It took doctors persevering for the 14-hour surgery and Zulema herself to not give up during this hard battle.

The experience has given Zulema, now 24, a new perspective. Prior to her diagnosis, she had plans to sit for the LSAT exam and eventually become a litigation attorney. Today, she is changing careers to pursue teaching and currently working on her Master’s degree at her alma mater, Montclair State University.

“During my time sick, I had the unique opportunity to think in depth about my goals in life and the kind of person I wanted to be,” she says. “I realized teaching and guiding youth was where my passion truly lies.”

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