Young Cardiac Angiosarcoma Survivor Champions Narrative Medicine  

Since she was a young child in a family in which Portuguese and German were often spoken, Sarah Downey, 23, has been fascinated with different languages and cultures. Now, as a recent college graduate living with a very rare cancer of the heart known as cardiac angiosarcoma, Downey is committed to helping others facing cancer, along with their providers and caregivers, to better connect through their own shared language of experiences. 

The concept, known as narrative medicine, centers around the ability of healthcare providers and caregivers to deliver more holistic care by learning more about their patients as individuals beyond their diagnoses. In addition to empowering patients to feel more seen and understood, those who practice narrative medicine can gain insights into how to best treat and care for patients based on their specific circumstances. 

Downey, a lifelong Rhode Islander, understands from personal experience the value of narrative medicine. Although cardiac angiosarcoma is not curable, the open and honest discourse that she shares with her oncologist Andrew Wagner, MD, PhD, and the rest of her clinical team in the Sarcoma Center at Dana-Farber gives Downey a sense of confidence and calm. Emboldened by the experience, which she helped to cultivate, Downey is reaching out to young adults with various cancers – as well as their caregivers and clinicians — and sharing their stories on a website she launched to provide a roadmap for more holistic patient-provider interactions.  

“Narrative medicine involves thinking about the whole person,” explains Downey, the daughter of two nurses. “An oncologist may be primarily focused on treating a patient’s cancer, which is great, but by sharing real conversation with them outside of their treatment plan, they can help that patient feel more comfortable and refer them to other providers as needed.” 

Road to diagnosis 

The initial obstacle Downey faced around her cancer was getting it correctly diagnosed.  

Sarcomas make up just 1% of cancers in adults, and cardiac angiosarcomas are an extremely rare subtype that form inside the heart or are associated with the great vessels (the veins and arteries connected to the heart). How and why sarcomas form remains a mystery, and because they grow very quickly, they often have a wide variety of symptoms that can be evasive toward a single diagnosis. Even then, because these symptoms – including chest pain, fatigue, shortness of breath, and swelling of the legs or abdomen – are found in many common conditions, the imaging tests needed to make a cardiac angiosarcoma diagnosis are often not undertaken until other possible causes are ruled out. 

When Downey began experiencing extreme exhaustion during her senior year at Providence College in late 2023, the school’s clinic believed she had the flu and her primary care physician (PCP) assured her that stress was to blame. While she did have a hectic schedule as an Education and Hispanic Literature major with a full courseload, a thesis to finish, a student teaching practicum, and a job at a local Boys and Girls Club, Downey still felt sure something more serious was causing the symptoms.  

“By January, I was having high fevers every night, along with throbbing headaches, and couldn’t sleep,” recalls Downey. “I thought it was my wisdom teeth, so I made an appointment to get them pulled out.” 

Downey never had that scheduled dentist visit. Her condition grew so bad that she went to the emergency room of a local hospital, where her case continued to baffle clinicians. A comprehensive set of tests, including a chest x-ray, was ordered only after a nurse practitioner in her PCP’s office took time to really listen to Downey’s experience.  

After visits to two more hospitals, and two biopsies, Downey was diagnosed in early February 2024 with cancer  — albeit the incorrect type.  

“They told me I had lymphoma,” Downey explains. “It wasn’t until I was sent to a hospital in Boston that I had another biopsy and learned it was actually cardiac angiosarcoma.” 

Oncologists started Downey on chemotherapy immediately. They also referred her to Dana-Farber, where Downey met her clinical team in the Sarcoma Center. Wagner explained that while surgery is sometimes an option for patients with cardiac angiosarcoma, Downey’s tumor was too deeply entrenched in her heart. It was causing compression of the great vessels — the major blood vessels that bring blood in and out of the heart — and if it continued to grow and spread, it could soon be fatal. She needed a new plan combining radiation and chemotherapy. 

Opening up 

Wagner’s confidence and competency put Downey at ease.  

“After what I had gone through, spending so much time at different hospitals, I needed structure,” recalls Downey. “I was dealing with something life-altering, and I didn’t want and couldn’t afford any more chaos. I  just wanted things to run smoothly, and from the moment I walked into Dana-Farber I felt I was in the right place. Everything was efficient, and everybody I met was warm and friendly.” 

Equally important to Downey was candidness. 

“I told Dr. Wagner I wanted to know everything, and not to hold anything back,” she explains. “He told me I had already outlived my initial prognosis of a few months, but he was honest about the severity of the disease and his inability to give me an exact time timeline, especially beyond a year.”  

The treatment regimen that Downey started at Dana-Farber paused the tumor’s growth and enabled her to graduate in May 2024. She was even able to travel to Spain that summer and start a master’s program when she returned, concurrently completing eight weeks of radiation treatment throughout the fall semester. 

A year later, however, it was discovered that the tumor in Downey’s heart had spread to her spine. She had additional chemotherapy to stop the growth, and when this treatment resulted in too many adverse side-effects, she brought her concerns to Wagner who found an alternative that was far less toxic. 

“As Dr. Wagner and I got to know each other better, I shared with him my passion for writing,” Downey recalls. “He told me about a friend of his who had lived for several years with a similar condition and written a book on his experiences. Dr. Wagner opening up about their friendship meant a lot to me, and further motivated me to continue my writing.” 

Such interactions also gave Downey an epiphany. Knowing how empowering the exchanges were to her, she wondered what other young adult patients with cancer were experiencing. Downey began studying narrative medicine for her master’s thesis, and the more she learned, the more she felt that it was a concept she wanted to explore professionally.  

Partnering with a friend in graphic design, Downey launched her website in mid-2025. Today, while continuing on monthly chemotherapy infusions, she is enthusiastically gathering and posting more stories on her site from patients, caregivers, and clinicians around the world.  

“In the face of dealing with a very challenging illness, Sarah has applied her impressive writing skills to telling her story and inspiring others to do so,” says Wagner. “She is not only helping to raise awareness of their conditions, but also promoting self-advocacy and resiliency. I have seen how positively this impacts Sarah and have no doubt that she is similarly impacting the lives of other patients and their families.” 

Downey is also keeping busy in other ways. She recently adopted a Goldendoodle named Valentina with whom she enjoys new life adventures, and she remains active in the Young Adult Program at Dana-Farber. 

“When I come in for appointments, my infusion nurse and nurse practitioners always ask about my dog, and where we’re traveling to next,” Downey says. “Sharing human interactions and conversations beyond symptoms is a crucial aspect of my care.”