But there was more to it.
His father, an orthopedic surgeon, was having dinner with colleagues around the same time when one remarked that people with myasthenia gravis also often have thymoma. So Heddaya went in to get a chest X-ray — which confirmed the thymoma diagnosis.
“I wasn’t frightened by the diagnosis, the doctors made me feel confident, and I was raised to be optimistic,” said Heddaya. “They said the tumor was ‘well-behaved but still malignant’ and felt it was unlikely to spread throughout my entire body.”
Despite working in health care in Egypt, Heddaya’s father wanted his son to go to the U.S. where he could find more treatment options. The family also had connections to Seattle, so in early 2015, Heddaya traveled to UW Medical Center – Montlake for surgery with Douglas Wood, MD, FACS, FRCS.
“The tumor was the size of a small soccer ball and had likely been growing since puberty,” said Heddaya. “I hoped the surgery would take care of it, but they did see some cancer cells on the pleura [the lining around the lungs and chest area] and predicted the thymoma would grow again, slowly.”
Unfortunately, they were right. After surgery and chemotherapy, the tumor returned, and in 2019, it was large enough that his UW physicians planned another surgery.
This time, surgeons entered through his back, and removed a rib along with the tumor and some of the pleura on the left side, near his spine. He also had to continue chemotherapy to help slow the growth of the tumor, since his team knew it would again return.
Because the tumor kept growing, in early 2022 Heddaya and his family reached out to Fred Hutch Cancer Center - Proton Therapy for more options. He consulted with John Kang, MD, PhD, who reviewed his scans and suspected the tumor had spread to the spinal cord. Kang ordered an MRI which confirmed it.
“Seeing Dr. Kang was a miracle,” Heddaya said. “He found the new tumor, recommended immediate robotic surgery and started me on proton therapy. He also told me we caught it early. I didn’t even have any symptoms.”
“The MRI confirmed that Youssef’s tumor in the upper thoracic spine was abutting his spinal cord,” Kang said. “I referred him to spine tumor specialist Dr. Anubhav Amin to perform minimally invasive surgery to create a small separation between the tumor and the spinal cord, which allowed me to increase the proton radiation dose to the tumor with the goal to maximize local control. Cancer care is multidisciplinary, and I am lucky to work with colleagues such as Dr. Wood, [Youssef’s] oncologist Dr. Raphael Santana-Davila and Dr. Amin.”
“Proton therapy was so easy,” said Heddaya. “I wasn’t scared of it because I had read other people’s stories and they made me feel safe. I understood that proton therapy minimizes harm to the healthy body. I saw people graduating from treatment and they looked happy.”
Heddaya relocated to Seattle for several months while getting proton therapy. Because the pandemic made it hard to get to know people, he adopted a toy poodle that he named Dahab, after a favorite diving and hiking town on the Red Sea. The pair took daily walks around Green Lake and became a well-known duo.
During this time, Heddaya's doctors also switched Heddaya’s chemotherapy regimen and the tumor began to shrink for the first time.
He continued chemotherapy until April 2024, when his physicians ordered a temporary break. Although it is slowly regrowing, the cancer will be managed as a chronic condition, with Heddaya starting and pausing chemotherapy as needed and his team monitoring the tumor growth via MRIs every three months.
When a spot becomes critical, proton therapy is an option that can be used at that location.
“If Youssef would benefit from radiation in the future, I am prepared to treat him,” Kang said. “As a radiation oncologist at Fred Hutch and UW Medicine, I have protons, photons, neutrons and electrons available to me. I think about the best type of radiation to use for each specific case, as they have their unique advantages and disadvantages. I am privileged to have access to such an array of options to treat Youssef and patients like him.”
Today, Heddaya manages his grandfather’s farm near the Nile River, growing wheat, rice and potatoes. He leads an active life, and often heads for the Red Sea or the Mediterranean to go paddleboarding and kayaking.
“My advice for others is, take it easy,” said Heddaya. “Trust in the process, don’t be scared, especially when it comes to protons. Thanks to my great care at Fred Hutch and UW Medicine, I can do everything I want to do — even sports and exercise.”
