Chris’ Story: A Chordoma Survival Story Made Possible by Mass General Cancer Center

Contributor: Shannon MacDonald, MD

Aug 27, 2024

5 minute read

Chris Kobos standing with his family in summer 2024. — Chris Kobos with his family in summer 2024.

Chris Kobos, 46, is in good health and raising two children with his wife Dana. It's a normal life that would have been hard to imagine in 1997, when he was diagnosed with a very rare form of cancer called chordoma. If not for his world-class care team at Mass General Cancer Center, he might not have survived to share his story today.

Chordoma is a slow-growing bone cancer that can occur anywhere along the spine, from the base of the skull to the tailbone. Each year, the disease is found in only 300 to 350 people in the United States.

Chris was fortunate to live near Massachusetts General Hospital, which has unrivaled experience in treating chordoma, at the time of his diagnosis. Twenty-seven years later, he's very grateful for the care he has received.

"My surgical team at Mass General saved my life when I was 19, and my radiation oncologist, Norbert Liebsch, MD, PhD, has given me everything after that," Chris said.

Specialized expertise helps with diagnosing chordoma

At age 18, Chris didn't worry too much about his health. So, after experiencing occasional double vision—and visiting a neural ophthalmologist who couldn't find the cause—he didn't dwell on it. The problem eventually went away, and he left home to start college at Colgate University.

During his freshman year, Chris had occasional symptoms like trouble urinating and a feeling of electric pulses running up the back of his neck. He figured they were related to stress or an injury suffered while playing rugby. Instead, they were signs that something was wrong.

The following August, Chris was on vacation on the Massachusetts island of Nantucket. Upon waking up one morning, he couldn't walk straight or urinate. His eyes ached as well.

A local hospital performed a CT scan that detected an abnormality near the base of his skull. Since the hospital was not equipped to handle a case like this, he was airlifted to Mass General.

Chris Kobos recovering in the hospital after surgery.

The night of his arrival, Chris underwent emergency surgery to relieve pressure in his brain. Within the next few days, he was diagnosed with chordoma. The tumor was pushing deep into his brain stem, affecting the signals going to the rest of his body.

"Since it's so rare, chordoma is sometimes misdiagnosed as another type of tumor—most often a tumor of the pituitary gland," said radiation oncologist Shannon MacDonald, MD, who began caring for Chris after Dr. Liebsch retired from clinical care in July 2020. "But physicians with lots of experience seeing the disease, like we have at Mass General, will typically notice classic features of chordoma on an MRI. And then you need a surgical pathology report to confirm it."

Establishing the use of proton therapy for chordoma care

Chris' tumor had developed near his skull base. This type of chordoma rarely spreads to other organs. And though it can come back, it usually does so in the same location. For these reasons, people with a skull base chordoma tend to have a "relatively favorable prognosis," according to Dr. MacDonald.

The first step in chordoma treatment is surgically resecting, or removing, as much of the tumor as possible. Due to their sensitive location, skull base chordomas cannot be completely removed. At Mass General Cancer Center, a team of skull base experts, including neurosurgeons and plastic surgeons, operated on Chris. The procedure took upwards of 14 hours.

About a week later, Chris and his family met Dr. Liebsch for the first time to discuss his upcoming discharge. Dr. Liebsch explained that Chris was a good candidate for an advanced form of radiation therapy known as proton beam therapy.

Traditional radiation therapy delivers X-rays, a form of electromagnetic radiation, which enter into and exit out of the body. Along the way, they treat the tumor but damage healthy tissue nearby. In contrast, proton therapy delivers a high-energy, focused proton beam. The beam travels a limited and controlled distance into the tumor, but no further, leaving healthy tissue undamaged if administered properly.

At the time of Chris' treatment, Mass General patients received proton therapy at the Harvard Cyclotron Laboratory, located at Harvard University. Upon opening in 1949, the facility conducted research on nuclear physics. In the 1960s, Mass General physicians began collaborating with physicists and engineers at Harvard to apply the technology for clinical care.

Between 1961 and its closing in 2002, the Cyclotron provided proton therapy for more than 9,000 patients. Resection surgery followed by proton therapy is now the standard of care for treating chordoma.

"Previously, chordoma was considered a disease nonresponsive to radiotherapy and very difficult to cure with a very poor prognosis. Standard radiation therapy delivered in lower doses wasn't enough to control these tumors," Dr. MacDonald said. "Our predecessors at Mass General discovered you could safely go to higher doses of radiation using proton therapy, and that led to a curative treatment for chordoma."

Home of New England's only proton therapy site

Early on in his postsurgical treatment, Chris traveled to Mass General each morning for traditional radiation therapy and to the Cyclotron each evening for proton therapy. By the end of the six-week regimen, he was exclusively receiving proton therapy twice a day at the Cyclotron.

"It certainly was different going to the Cyclotron," he recalled. "For the traditional radiation, I went to a room at Mass General that felt like a medical facility. The Cyclotron was in an old physics building. It felt like walking into a machine. It was interesting but never bothered me."

Chris' regimen looked different than it would today. Now, treatment is typically delivered only with proton therapy once a day for eight weeks.

In 2001, four years after Chris' treatment, Mass General opened the Northeast Proton Therapy Center, later renamed the Francis H. Burr Proton Therapy Center. In 2020, the hospital opened the Gordon-Browne Proton Therapy Center. The two centers, which comprise New England's only proton therapy site, have treated more than 10,000 patients with proton therapy, including more than 1,000 cases of skull base chordoma.

According to Dr. MacDonald, Mass General Cancer Center has by far the most experience in treating chordoma with proton therapy. That has a major impact on patient outcomes.

"This is a very specialized treatment that, if delivered incorrectly, would be catastrophic to the patient," she said. "It's critical that everyone from the physicians, physicists, and dosimetrists who create the proton radiation plan to the radiation therapists who administer the treatment get hands-on training from colleagues who have many years of experience doing this. That way, you ensure the benefits of the treatment outweigh the harm."

'Trying to live a normal life'

Chris Kobos standing with family on Christmas in 1998. — Chris Kobos with his family on Christmas in 1998.

Chris took a semester off from college to undergo and recover from radiation and proton therapy. He survived the treatments with minimal side effects, other than some minor hair loss. About midway through, he even felt good enough to go snowboarding.

"The therapy was just something that was interrupting my day," he said, "but I was trying to live a normal life."

Chris returned to Colgate for the spring 1998 semester and went on to earn a degree in environmental geography. After an unsettling interlude in which he had to wait over seven months for an MRI that would reveal whether the treatments had worked, he received the fortunate news that they had.

Chris, who now lives on Long Island, has since come back to Mass General periodically for MRIs. He developed a close relationship with Dr. Liebsch, whom he saw for his MRIs for 25 years. "My wife and I joke that he's part of the family," Chris said. "He was fantastic—warm, open, calm, and considerate. And he really listened. I feel like he cared about me not just as a patient but as a person."

Upon Dr. Liebsch's retirement, Dr. MacDonald became Chris' new radiation oncologist. "I wanted to keep that communication with the Mass General team intact because of my history there and, obviously, the quality of the care," he said.

Chris is now scheduled to see Dr. MacDonald for MRIs every two years. She said that lifelong monitoring is essential.

"A chordoma is an extremely slow-growing tumor, and there are risks from treatment that could develop 20 or 30 years later," she noted. "We see many institutions that stop following patients after 5 to 10 years, and that's not appropriate for this disease. In our opinion, patients really should be followed for life."

Like so many other patients with chordoma, Chris has benefitted from the multidisciplinary care available at Mass General. Over the years, a team with highly specialized expertise in treating chordoma—whose members span radiation oncology, medical oncology, neurosurgery, head and neck surgery, radiology, neuroendocrinology, neuro-ophthalmology, and other specialties—has watched over him.

Being followed long term by the team that treated you is important. Should you develop a complication, we can guide you to a Mass General specialist who is quite familiar with this tumor and what you need as a patient.

Shannon MacDonald, MD
Radiation Oncologist

Dr. MacDonald added that the quality of chordoma care at Mass General is enhanced by a bi-monthly multidisciplinary skull base tumor board that reviews cases from around the world. Furthermore, the Stephan L. Harris Center for Chordoma Care brings Mass General Cancer Center's multidisciplinary expertise to the evaluation, treatment, and support of patients with chordoma.

The benefits of a positive outlook

Chris, who described his life as "fantastic," is grateful for his wife, their two kids, and his health. He makes a point to stay active through mountain biking and other outdoor activities. For those who are diagnosed with chordoma, he encourages trying to maintain a positive outlook.

"Having that mentality of putting it behind you and not focusing on the negative scenarios that could happen is huge," he said. "Obviously, not everyone will be as lucky as I've been. But I think that being able to look forward and understand that life continues has been a huge part of my recovery."

Contributor

Shannon MacDonald, MD

Radiation Oncologist