Center for Chordoma Care

Overview

The Harris Center brings the Cancer Center’s multidisciplinary expertise to the evaluation, treatment, and support of chordoma patients. An advisory group bringing together specialists throughout Mass General has been established to support this goal and advance the search for a cure.

The Stephan L. Harris Center is a center of excellence at the Massachusetts General Hospital that provides unsurpassed compassionate care while advancing the art and science of evaluating, diagnosing, treating, curing, and supporting the patient with chordoma.

Each patient in our program is evaluated and cared for by a multidisciplinary team of experts who specialize in the diagnosis and treatment of chordoma.

These specialists include:

• Orthopedic surgeons
• Radiation oncologists
• Medical oncologists
• Reconstructive surgeons
• Neurosurgeons
• Musculoskeletal radiologists
• Musculoskeletal pathologists
• Oncology nurses and nurse practitioners
• Oncology social workers

About Stephan Harris

When Stephan Harris was diagnosed with recurrent chordoma, he and his wife traveled from abroad to seek the best possible care. They consulted with specialists at several major U.S. cancer centers, and chose Massachusetts General Hospital and Henry J. Mankin, then chair of Orthopaedics, because of his world-renowned chordoma expertise.

Dr. Mankin subsequently referred him to Frank X. Pedlow, MD, orthopaedic surgeon, and Frederick G. Barker, MD, neurosurgeon. As Mr. Harris's disease unfortunately progressed, Francis J. Hornicek, MD, PhD also became involved in his care.

After Harris’s death, his wife made a major gift in his honor to establish the Stephan L. Harris Center for Chordoma Care at the Massachusetts General Hospital Cancer Center. “I made this gift to help other people with this disease, and to create a place where they know there will be doctors and nurses, as well as other families, who understand what they are going through,” she said. “My husband wanted to do this too.”

Mrs. Harris had previously given generously to support chordoma research at Mass General. She felt that the place and timing were right to establish this first center in the world with a single focus on chordoma care because the team had already committed themselves to chordoma research.

In addition, Mrs. Harris’s gift established a fund to help families receiving care at the Harris Center with transportation and housing expenses. “When my husband was sick, I was able to travel with him so he would not be alone,” she says. “Stephan would have wanted to help others travel with their families for treatment.” This assistance, notes Anne Fiore, NP, is already helping families and patients, freeing them to focus on treatment and healing.

For Patients

Our multidisciplinary group of physicians and clinicians specializes in the diagnosis and treatment of chordoma. The team of clinicians at Mass General represents one of the largest chordoma treatment groups in the world.

Benefits of the Team Approach to Chordoma Treatment

When a patient is referred to the Harris Center at Mass General, he or she is asked to bring all pertinent records and radiology studies that have been completed with them to their visit.

Patients are seen in our multidisciplinary clinic, where all aspects of care are available in one location. This unique one-stop clinical care unit helps patients get the comprehensive care they need without having to leave the clinic.

Treatment providers coordinated through our team approach include orthopedic oncology surgeons, radiation oncologists, medical oncologists, neurosurgeons, reconstructive surgeons, radiologists, pathologists and nurse practitioners who specialize in the diagnosis and treatment of chordoma.

Patients have access to the most technically sophisticated treatments available for chordoma. 

The Treatment Plan

• Care of our Chordoma patients begins with comprehensive imaging studies including MRI, CT and nuclear imaging as clinically indicated. Previous pathology slides are reviewed by our pathologist. Additional biopsies are done if necessary.
• The patient then receives preoperative radiation therapy for two to five weeks. There is a break in treatment for four weeks before surgery takes place. When two weeks of radiation is given, surgery can be done immediately on completion.
• Surgery to completely resect the tumor usually requires two incisions approaching the tumor from the front (anterior) and back (posterior). Due to bowel and bladder issues patients may require an ostomy. Intraoperative radiation therapy may also be given. A patient’s average hospital stay is ten to fourteen days. A postoperative check is done in two weeks.
• Patients return home for four weeks to allow time for healing.
• They return for postoperative radiation therapy (proton therapy) for about 5 weeks. This protocol requires a minimum of three months. Most of our patients take six to twelve months to regain strength, endurance and a sense of normality in their lives.
• Chordoma follow-up requires imaging studies and physical exams. Chordoma is slow-growing and often recurs. Thus, visits are required every three months for two years, followed by visits every six months for three years, and then annually for five years., This timeline comprises the comprehensive ten-year follow-up plan.

The Stephan L. Harris Patient and Family Fund

Living with a diagnosis of chordoma affects all aspects of the patient's and family’s life — physical, emotional, social, financial, and spiritual.

The Stephan L. Harris Patient and Family Fund allows chordoma patients to undergo treatment with peace of mind, knowing that their financial burden of chordoma treatment is lessened.

Many patients travel from afar to receive this comprehensive and technically sophisticated treatment. Most of the Harris Center's funds go to reimbursement of the chordoma patient's travel expenses.

For Physicians

The Stephan L. Harris Center for Chordoma Care is dedicated to providing unsurpassed compassionate care for your patient while advancing the art and science of evaluating, diagnosing, treating, curing, and supporting the patient with chordoma.

Our Team Approach to Chordoma Treatment

Providing care for a chordoma patient is complex and time-consuming. We have found that the most effective treatment and care can be given by a team of specialists working together.

A team approach is important in dealing with:

1. Chordoma diagnosis (pathologist)
2. Identification of tumor size extent and metastases via imaging studies (musculoskeletal radiologist)
3. Treatment (radiation oncologist, orthopedic oncologist, surgical oncologist, general oncologist, neurosurgeon, plastic surgeon, nurse practitioner, and medical oncologist)
4. Follow-up care (entire medical team as needed)
5. Emotional concerns (social worker and psychiatrist)
6. Ongoing research

Current Clinical Trials

• Hypoxia-PET and IMPT/Dose Painting in Patients with Chordomas. A Pilot Study.
• High Dose Intensity Modulated Proton Radiation Treatment +/- Surgical Resection of Sarcomas of the Spine, Sacrum and Base of Skull -Now Enrolling