It Could Happen To You!
Breathlessness, nausea, a cough and a mass suggested cancer. But was it?
By Marlene Cimons The Washington Post
Published May 19, 2025
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In August 2023, Chelsea Cresencia flew to New York City from California with her boyfriend, Allen Nguyen, on her first visit to the East Coast for a planned "fun trip" - filled with good food and touristy things, including a walk through the Chelsea district and its famous market, "because it has my name," she says.
But soon after they arrived, Cresencia began vomiting after almost every meal, and a shortness of breath that had nagged her since 2018 grew worse, making it hard for her to walk more than 10 minutes without having to rest. She also began coughing incessantly.
"We thought it was food poisoning and brushed it off, but I was throwing up once or twice a day, every day," says Cresencia, now 27, who works remotely for a health insurance company as a user experience manager.
"She was also coughing up small amounts of blood," recalls Nguyen, now 28, a software engineer. "It really freaked me out," he says.
Nevertheless, they continued on with the trip but curtailed their activities and food, and flew home at the end of the week. Once back in San Diego, Cresencia says, "the symptoms seemed to calm down a bit, I started to go days without throwing up, and my breathing also improved. I told myself it had to have been something about New York." But a few weeks later, while in the San Francisco Bay Area visiting Nguyen, she suddenly developed a new and worrisome symptom: very swollen feet. "They didn't hurt. They were just filled with fluid," she recalls.
Nguyen took her to an urgent care facility, where doctors ran a series of tests, including a CT scan that found a mass on her heart, a shocking discovery in someone so young. She was terrified. "My heart dropped and my ears felt hot," she recalls. "How did it form? Did I have cancer? Did I do something wrong?"
The finding was the start of a harrowing months-long ordeal to figure out what the mass was, including a biopsy that nearly killed her and the radical surgery that saved her life - and revealed what had made her so sick.
"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," she says.
• From urgent care to the hospital
Cresencia had been coping with shortness of breath for several years, mostly when walking up hills, but she ignored it, thinking it was too "subtle" to bother seeing a doctor. The New York trip changed that. "It was worse than usual," she says, and the bouts of nausea and bloody coughing were new.
At the urgent care, doctors were clearly worried about the mass they'd seen on the CT scan and urged Cresencia to go to the hospital. The couple went to a small community hospital near Nguyen's home in the San Francisco Bay Area. After a six-hour wait, a physician finally examined her and immediately admitted her to the hospital.
The next day, wanting a closer look, the doctors at the hospital ran a transesophageal echocardiogram, a procedure that uses ultrasound to view detailed images of the heart and its surrounding structures. It showed a large growth in the left atrium, one of the heart's two upper chambers, and doctors told her it almost certainly was the underlying cause of her symptoms. They recommended she seek specialty care at a larger hospital, and a week later, in San Diego, doctors at a second hospital ran additional tests, saw the mass and also told her they thought they saw "holes in my lungs," she says.
The doctors told her she would probably need a heart-lung transplant and sent her to Jacobs Medical Center at UC San Diego Health in La Jolla, the only hospital in the area that performs such surgeries.
There, cardiac specialists told Cresencia there were no holes in her lungs, but they thought she had an angiosarcoma of the heart, a rare and virulent cancer that originates in the lining of the blood vessels and has a grim prognosis. "They told me … it wouldn't look good if that's what it was," she says. "I was terrified. I cried a lot because I was scared of dying and afraid of losing Allen and my family."
The treatment for angiosarcoma varies, depending on the tumor's size and location, and can involve both surgery and chemotherapy. Even then, the outlook is very poor, with survival often less than two years.
Her UC San Diego cardiologist, Marcus Urey, who is director of heart transplantation and cardiac amyloidosis, felt he needed to confirm his presumptive diagnosis before deciding on the most appropriate treatment - whether to start chemotherapy, for example - so the doctors attempted a biopsy. But that procedure failed when they couldn't get a probe past the outer rim of the mass to collect the needed cells.
A second attempt was even worse: The mass was blocking veins that carry blood from the lungs into the left side of the heart, where the mass was, which was causing pulmonary hypertension, or high blood pressure in the lungs. Under anesthesia, the right side of Cresencia's heart - already under strain - experienced failure and circulatory collapse, known as shock. When this happens, the circulatory system is unable to supply oxygen and nutrients to the body's tissues.
To save her, the doctors hooked Cresencia up to life-support technology that takes over a patient's breathing and heart function. She was on an ECMO - or extracorporeal membrane oxygenation - machine for 10 days, intubated and sedated until she finally stabilized, and while her doctors debated what to do.
They decided they had no choice but to operate and remove as much of the mass as possible, even not knowing exactly what it was. Given that her heart failure was worsening, "there were no other options other than trying to remove as much of the tumor as possible. … Without surgery, we considered her prognosis terminal," Urey said.
"I told the surgeon she will die if we do nothing," Urey recalls, and then reached out to her family "and everyone was on the same page. 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."
They scheduled immediate surgery.
Cresencia has no memory of her time on ECMO or of going into surgery. However, her doctors and Nguyen recall how at one point she scribbled "I love you" with a permanent marker on the arms of Nguyen, her parents and her five siblings. The night before her surgery, Cresencia gave her surgeon, Victor Pretorius, a fist bump and handed him a note where she had written: "You got this!" Pretorius recalls her anxiety. "I could see it in her eyes, the fear. She was really courageous, trying to say goodbye to her family. It was very hard."
The surgery took nearly 10 hours and involved an 11-person team of two surgeons, three anesthesiologists, four nurses and two technicians. With Cresencia still on ECMO, Pretorius removed her heart and - while it was outside her body - cut away the tumor and reconstructed the affected left atrium using artificial pig tissue. He also removed scar tissue from three of four pulmonary veins to open them up. He says he couldn't do much with the fourth because it was too scarred. The doctors then put her heart back into her body.
Pretorius says the mass he'd removed "looked nothing like angiosarcoma. It was hard and leathery. I wasn't sure what it was. 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." So it was not a deadly angiosarcoma as they had feared. But pathologists saw a type of white blood cell called histiocytes, which provided the first real clue about what was wrong with her.
• The pathology report
When the final pathology report finally came in, the analysis found that the mass was made up of a proliferation of histiocytes - the hallmark of a very rare disorder known as Rosai-Dorfman disease, a condition that most often affects children, teens and young adults. Only about 1 in every 200,000 people get it, according to the Cleveland Clinic. It causes an overgrowth of the immune system's white blood cells, most often in lymph nodes, leading to excessive swelling, but also much less commonly in other sites in the body as well.
"Most physicians have never heard of it," says Aaron Goodman, the UC San Diego hematologist who now is monitoring her. "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."
In some patients, treatment includes the use of medications such as steroids, drugs to suppress the immune system and sometimes chemotherapy. In Cresencia's case, however, physicians believe they removed the entire tumor, so "there is nothing for me to do except surveillance," Goodman says.
Cresencia has periodic MRIs to ensure it doesn't return - and so far, it hasn't. Goodman says it can come back, but experts don't know what percentage of patients experience a recurrence. Cresencia's last checkup in April was perfect.
As for her ordeal, Cresencia says she feels fortunate and "incredibly grateful" to the doctors at UC San Diego not only for figuring out what was wrong but also for their "genuine kindness."
In February, during the week including Valentine's Day, Cresencia and Nguyen, now living together in the Bay Area, returned to New York, a "redemption trip," she says, where they walked and explored the city every day without any issues.
"I have come to really appreciate all the 'firsts' I get to experience," she says, including snow that fell during their first night in the city. "As a true Californian, I have never really seen the kind of snow that blankets over sidewalks and grazes against your eyelashes. That night I threw my first snowball!"
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