Chris’ Story: A Chordoma Survival Story Made Possible by Mass General Cancer Center
Discover how proton radiation therapy saved the life of 19-year-old Chris Kobos after he was diagnosed with a rare chordoma.
Contact Information
Mass General Cancer Center
55 Fruit Street
Boston,
MA
02114
Phone: 877-726-5130
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The Massachusetts General Hospital Cancer Center’s Center for Sarcoma and Connective Tissue Oncology provides patients with expert chordoma care. We bring a unified focus to the evaluation, treatment, and support of chordoma patients, and to research advancing understanding of the causes of and treatments for this rare cancer.
Massachusetts General Hospital Cancer Center is home to the Stephan L. Harris Center for Chordoma Care, a comprehensive treatment and research center. In addition, the availability of proton beam therapy, as well as expertise in surgical management of spinal tumors, attract chordoma patients from around the world. Collaboration with specialists from the Center for Head and Neck Cancers, the Cranial Base Program, and the Massachusetts Eye and Ear Infirmary ensures expert, coordinated care for the widely varying manifestations of chordoma.
Our musculoskeletal pathologists specializing in cancer of the bones and soft tissues consult on chordoma cases from around the world. Every biopsy is carefully evaluated to ensure an accurate diagnosis and to exclude other tumors that can mimic chordomas.
During surgery, the pathologist works closely with the surgeon and radiation oncologist to make sure that the resection is as effective as possible. The archiving of tissue collected at the time of biopsy and resection is enabling our pathologists to study chordomas on a molecular level. Their research is aimed at discovering the pathogenesis of chordomas and uncovering tumor markers to guide future therapies.
Advanced imaging technologies help to define the size and shape of the tumor, identify important normal tissue nearby, and aid in removal of the tumor and protection of normal tissue. These include:
The Stephan L. Harris Center for Chordoma Care at Mass General provides extraordinary, compassionate care while advancing the art and science of evaluating, diagnosing, treating and supporting patients with chordoma. Treatment is tailored to address the unique needs of each patient, and usually involves advanced surgical or radiation techniques, or a combination of these approaches.
Your care team may include a wide variety of experts:
Mass General Cancer Center's Adolescent and Young Adult (AYA) Cancer Program provides specialized resources and support for our AYA patients. Patients can access supportive care resources including social work, psychology, psychiatry, sexual health and fertility, lifestyle medicine, integrative therapies, and parenting guidance. Dedicated AYA clinicians and program manager are available to connect patients to these resources and answer any questions.
Our surgeons have extensive experience treating chordoma while minimizing damage to surrounding structures. Advanced surgical techniques include:
Our radiation oncologists offer a range of therapies designed to shrink or destroy tumors while protecting normal tissue. Advanced technologies include:
Learn more about radiation therapy.
Physician-scientists in the Sarcoma Molecular Biology laboratory are pursuing research to identify the genetic abnormalities associated with chordoma. We have the largest archive in the world of chordoma tissue, which we study to uncover the mechanisms that drive chordoma and to search for a cure.
Learn more about chordoma research under way at Mass General's Harris Center.
The Cancer Center is a site for trials of new targeted agents as well as a National Institutes of Health-sponsored study of familial chordoma. We can offer participation in this study to families in which two or more relatives have chordoma. Our goal is to search for genetic or hereditary factors that may help us to better understand the disease and suggest new therapies.
Santiago Lozano-Calderon, MD, PhD
The Center for Sarcoma and Connective Tissue Oncology is one of the largest and most experienced sarcoma and chordoma treatment groups in the country. Our team specializes in the diagnosis and treatment of bone and soft tissue tumors, and provides the latest and most innovative treatments matched with compassionate care. Learn more from our team in this video.
Chordoma is a rare, slow-growing malignant tumor believed to arise from cellular remnants of the notochord.
Learn about the The Stephan L. Harris Center for Chordoma Care.
This program addresses the unique needs of patients with cancer ages 15-39.
This program helps patients regain physical abilities and maintain independence.
Personalized, team-oriented care for patients whose cancer has spread to their bones.
A checklist of items to bring with you for your first visit and helpful information.
We offer a variety of education and support resources to help you and your family.
We offer a wide range of integrative therapies, workshops and support groups.
Mass General has the only proton therapy site in all of New England, with two proton therapy centers.
This helped lead to new knowledge and breakthrough therapies.
Discover how proton radiation therapy saved the life of 19-year-old Chris Kobos after he was diagnosed with a rare chordoma.
Contact us to make an appointment or if you have any questions.