After months of a woman's unexplained symptoms, a mysterious mass near her heart, and a life-threatening procedure that nearly killed her, doctors feared the worst without a definitive diagnosis. What followed was a rare discovery, a high-stakes surgery, and an unexpected recovery, Marlene Cimons reports for The Washington Post.
When Chelsea Cresencia flew from California to New York in August 2023, she expected a fun summer trip — not the beginning of a medical crisis.
"We thought it was food poisoning and brushed it off," Cresencia said. "But I was throwing up once or twice a day, every day."
As Cresencia’s symptoms worsened, her boyfriend, Allen Nguyen, grew concerned. "She was also coughing up small amounts of blood," Nguyen said. "It really freaked me out."
Back in San Diego, Cresencia's symptoms briefly improved. "I started to go days without throwing up, and my breathing also improved," she said. "I told myself it had to have been something about New York."
However, a few weeks later when visiting Nguyen in the San Francisco Bay Area, a new symptom appeared: swollen feet. "They didn't hurt," Cresencia said. "They were just filled with fluid."
Shortly after, Nguyen took Cresencia to urgent care, where doctors ordered several tests to identify the cause. One of the tests — a CT scan — revealed something entirely unexpected: a mass on her heart.
"My heart dropped and my ears felt hot," Cresencia said. "How did it form? Did I have cancer? Did I do something wrong?"
The couple headed to a small hospital in the Bay Area. There, a transesophageal echocardiogram showed a large mass in her heart's left atrium. The doctors told Cresencia that it was likely the cause of her symptoms and recommended she seek specialty care at a larger hospital.
In San Diego, doctors at a larger hospital said they thought they saw "holes in my lungs," Cresencia recalled. They told Cresencia that she would probably need a heart-lung transplant and sent her to Jacobs Medical Center at UC San Diego Health.
At Jacobs Medical Center, cardiac specialists said there were no holes in her lungs, but they believed she had angiosarcoma of the heart, a rare and aggressive cancer that begins in the blood vessels.
"They told me … it wouldn't look good if that's what it was," Cresencia said. "I was terrified. I cried a lot because I was scared of dying and afraid of losing Allen and my family."
Initially, doctors wanted to confirm Cresencia's diagnosis through a biopsy before they decided on her treatment. However, both attempts at a biopsy failed, with the second leaving her on life support for 10 days.
As Cresencia's condition grew more urgent, her care team faced a critical decision. Marcus Urey, Cresencia's cardiologist, said that "there were no other options other than trying to remove as much of the tumor as possible. … Without surgery, we considered her prognosis terminal."
The choice was stark, and Urey made this clear to the surgical team. "I told the surgeon she will die if we do nothing," he said. "She was at high risk of dying if we identified a sarcoma, but had a 100 percent certainty of death if we did nothing. Everyone wanted to give it a shot."
Surgeon Victor Pretorius remembered Cresencia's bravery before the operation. "I could see it in her eyes, the fear. She was really courageous, trying to say goodbye to her family. It was very hard."
Over the course of the 10-hour surgery, Pretorius successfully removed Cresencia's heart, excised the tumor, and rebuilt her left atrium with artificial pig tissue. But once the mass was removed, Pretorius immediately noticed something unexpected.
"It was hard and leathery. I wasn't sure what it was," Pretorius said. "I took a piece of it and sent it to the pathologist for a quick evaluation. They called back within an hour and told us they didn't see any malignant cells."
The final pathology report offered a new explanation for Cresencia's condition: Rosai-Dorfman disease, a rare immune disorder caused by an overgrowth of white blood cells known as histiocytes.
"Most physicians have never heard of [Rosai-Dorfman disease]," said Aaron Goodman, a hematologist at UC San Diego. "They don't know what it is and have never seen it. [It] is an incredibly rare disease to begin with, and hers was a very rare presentation of a very rare disease. It was in a bad spot and could have been lethal."
Because the mass was fully removed, Cresencia required no chemotherapy or further treatment. "There is nothing for me to do except surveillance," Goodman said. Cresencia's most recent MRI in April showed no signs of recurrence.
"While I do wish I would have gotten my health checked sooner, I've found myself focusing less on the past and more on enjoying the now," Cresencia said.
She and Nguyen have since moved in together in the Bay Area. In February, they returned to New York for what she called a "redemption trip." This time, the only surprises were joyful ones.
"I have come to really appreciate all the 'firsts' I get to experience," Cresencia said. "… That night, I threw my first snowball!"
(Cimons, Washington Post, 5/17)
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