It was March 2017 when Tessa Ramezane first noticed the pain in her hip. Every runner experiences occasional aches and pains, but this grew increasingly worse.
Ramezane, an avid runner, athlete, and yoga practitioner, has always been in tune with her body, but from the beginning the cause of her pain was hard to pin down. It was unresponsive to physical therapy and made worse by a steroid treatment. By July the pain was so intense she could no longer run, nor could she stand anything, even fabric, touching the lump that had formed on her hip after a steroid treatment.
No one seemed to know what it was. One doctor tried lancing the lump. One thought it might be a staph infection. Another did an ultrasound and told Ramezane that although he didn’t know what he was looking at, it didn’t look good. He recommended an MRI.
Her sister-in-law insisted Ramezane make the trip from Greensboro to Duke to get the MRI. She put Ramezane and her husband, Bruce Procton, in touch with her daughter’s orthopaedic doctor there.
Ramezane and Procton first met Will Eward, DVM, MD, at the follow-up physician appointment after the MRI. “He was the most calming doctor I've ever met,” Procton said. “He told Tessa, ‘You're in good hands now. We've been looking into this, and we're going to get this solved.’”
Eward said he wanted to remove the lump and do a biopsy of her glute muscle. And he wanted to do it “tomorrow.” Ramezane remembers being terrified.
Finally, a Diagnosis
As Procton recalled, the biopsy results indicated that Ramezane had cancer, but it was unclear what type of cancer it was. It would take a couple of weeks for Eward and his colleagues to figure out that Ramezane had pseudomyogenic hemangioendothelioma, a type of connective tissue cancer similar to sarcoma that was so rare that only 60 cases had ever been reported.
Sarcomas and connective tissue cancers like the one Ramezane was diagnosed with develop in bones and soft tissues, including fat, muscles, tendons, blood vessels, and nerves. Noticeable symptoms are often a lump or pain, depending on where in the body the tumors form.
Even with the diagnosis, uncertainty about the tumor’s progression made choosing a treatment more fraught than normal. But Eward’s diligence and empathy shone through. He was available by text and always supportive. “He was able to take something which was very scary and humanize the whole thing,” Procton recalled. “None of the alternatives were good, but he made us feel like we would be well cared for.”
The couple explored all their options, including treatment at other highly regarded cancer centers. In the end, the ongoing support they got from Eward convinced them: Ramezane would be treated at Duke.
“It was hands down the scariest time of my life,” said Ramezane. “And it was the comfort and the guidance he gave us that made the difference.”
They scheduled surgery for March, one year after Ramezane first noticed the pain.
The procedure successfully removed the tumor. It also required removing her left gluteus maximus, a large muscle responsible for the movement of the hip and thigh that acts as a shock absorber when we walk and run.
Losing it made running again a challenge, but Ramezane was determined and persistent. Four months after her surgery, she was testing out short runs. Over time other muscle groups compensated, and by September when she ran in Duke’s Strike Out for Sarcoma 5k race, she set an 8.25-minute-mile pace. The following year, she finished ahead of Eward with an 8.03-minute-mile pace.
Making a Difference
In gratitude for the outstanding care provided by Eward and the entire sarcoma group, Procton, on behalf of the Procton family, has made a $1 million gift to create two $500,000 endowments to support sarcoma patient care and research at Duke.
Sarcomas are rare: fewer than 18,000 people will be diagnosed in the U.S. in any given year. They are also one of the deadliest of the rare cancers. Treatment consists of surgery or surgery with chemotherapy and/or radiation, but about 50% of cases will be resistant to all treatment.
“Because it's so rare and people don't know about it, it's really hard to raise money from any source, whether that is federal funding or philanthropy. This means that patient care and research end up being chronically underfunded,” Eward said. “I can't tell you how much I appreciate this gift, and how hugely important it is to us.”
The first of the two funds, the Procton Family Orthopaedic Oncology Fund, will support patients who struggle to afford care, as well as research to improve patient care. The cost of traveling to Duke and covering basics like gas, food, and lodging can be steep hurdles for many families.
“This is especially important because patients don’t have many options, as very few hospitals have the ability to care for sarcoma patients,” Eward said. “You wouldn’t believe how many patients don’t get the care they need because they can’t afford the gas to drive to Durham. This fund will help those patients. And it will also help us improve clinical care. When we replace a part of someone's femur, for example, it's difficult to make it work like a normal femur, and it's challenging to conduct research into how to do that better. Now we will be able to make operations like this better.”
The second fund, the Will Eward DVM, MD, Comparative Oncology Fund, will support research aimed at better understanding sarcomas across different species in hopes of developing better therapies and finding a cure. As Eward, who is also a veterinarian, explains, sarcomas are found in many species, including, dogs, whales, lions, and others. By looking at mutations across species, researchers can begin to identify mutations that drive these cancers.
Giving Back
For Ramezane and Procton, the sale of Procton’s family’s business in 2023 made their gift possible.
“I believe that if you're fortunate enough to have the means to do so, then you ought to be giving back to those things that you truly believe in,” said Procton. " We hope this gift will make a difference in their work to better understand these cancers. Knowing how unique Duke Cancer Institute is, we wanted to support it.”
They also wanted Eward to have the means to give future patients the same exceptional care he gave them.
“He is the epitome of compassion and completely committed to his patients,” said Ramezane. “Frankly, his work is miraculous, and we would like to think that this gift could relieve some the funding stress he is under to help his patients get the care they need.”
The Procton gift is the Sarcoma Center’s first endowment.
“We are deeply grateful to the Proctons for their support for our sarcoma patients and research into this difficult-to-treat cancer,” said Michael Kastan, MD, PhD, executive director of Duke Cancer Institute. “Dr. Eward is a talented, deeply compassionate physician. As an orthopaedic surgeon, physician scientist, and veterinarian who treats sarcoma in both human and canine patients, he brings a unique perspective. We hope this gift will help us pioneer new research modalities and therapies for sarcoma and rare connective tissue cancers.”
For Ramezane and Procton, Duke has earned their trust. “Duke attracts great, talented doctors,” said Procton. “Whether it's cancer or any other issue, Duke is where I would want to put my trust.”
Ramezane completed her post-surgery surveillance in 2022. She remains cancer-free today.
By Wendy Graber
April 23, 2024