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The Stephan L. Harris Center provides compassionate care while advancing the art and science of evaluating, diagnosing, treating, curing, and supporting patients with chordoma.
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. “As part of that effort, we are building a chordoma care information center on our website that we hope will be a resource for patients and physicians internationally,” notes Dr. Francis Hornicek, who directs the Harris Center.
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:
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 the 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’ disease unfortunately progressed, Francis J. Hornicek, MD, PhD, now chief of the Orthopaedic Oncology Service and Co-director of the Center for Sarcoma and Connective Tissue Oncology, 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 Dr. Hornicek and his 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. “The Harris Center is helping us extend the expert level of care available here at Mass General to chordoma patients around the world,” adds Dr. Hornicek.
Welcome to the Stephan L. Harris Center for Chordoma Care at Massachusetts General Hospital. 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.
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.
To contact us for an appointment or new patient referall, the new patient coordinator, at 617-724-8193.
Click here to download the Harris Chordoma Center Brochure
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.
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:
To refer a patient to the Harris Center, please call the Connie Peters, the patient coordinator, at 617-724-8193 or by email.
"It is a privilege and unique opportunity to participate in the care of chordoma patients."
"The clinical management of patients with chordomas warrants a multidisciplinary approach. The surgeries are technically, physically and emotionally demanding. Each patient must be closely followed for many years and this allows for the development of a close personal relationship between physician and patient. It is this relationship where the reward truly lies."
“Chordoma patients need to be taken care of by a multidisciplinary team experienced in the specialized care of these patients. Few centers of excellence exist where these rare tumors are treated. The initial effort in managing their disease is our best chance at obtaining a positive outcome.”
"We have developed improved surgical techniques, as well as sophisticated radiation therapy techniques, including protons, that clearly have improved our ability to control these tumors, as documented in our recent publications."
“To manage a disease as rare and challenging as chordoma, you need a high volume chordoma center where world leaders in chordoma biology, surgery, radiation, pathology, radiology and nursing can all work closely together in a seamless fashion. MGH has exactly such a center.”
"One point regarding chordoma treatment that cannot be overemphasized: evaluation and treatment by a group of highly specialized physicians with extensive experience in the management of the chordomas is absolutely critical, because the best chance to eradicate the tumor is at the time of initial treatment."
Orthopaedic Oncology Surgeon & Orthopaedic Spine Surgeon
Orthopaedic Oncology Surgeon
Chordoma is a rare, slow-growing malignant tumor believed to arise from cellular remnants of the notochord. The treatment of chordomas is difficult. Wide surgical excision is desirable, but it is rarely feasible based on the anatomic location of the tumor at the base of the skull or the base of the spine.
Currently there are no effective drugs for chordoma, and there are no drugs currently approved to treat chordoma. Unlike with other types of sarcoma, there is no specific known tumor-suppressor gene or oncogene associated with chordoma.
There is a need, however, for understanding the molecular biology of chordoma. We have obtained a number of chordoma cell lines. Most importantly, the Massachusetts General Hospital Sarcoma Group has archived more than 150 cases of chordoma tissues and paraffin blocks in our tissue bank. DNA, RNA and protein samples from chordoma tumor tissues will be analyzed by CGH or SNP array, gene and protein expression profile with the hope of identification of chordoma susceptibility genes or pathways.
The new discoveries from these studies will identify potential tumor-suppressor genes and oncogenes, then proteins for testing in chordoma tissues. We plan to determine the efficacy of targeting mTOR, Stat3 expression in chordoma cells by small molecular compounds, siRNA and to evaluate its effect on chordoma cell growth, proliferation and apoptosis.
Our goal is to be able to identify new molecular targets, assess new therapeutics, and better characterize the prognosis of chordomas.
Recent Chordoma Studies
The following articles are a selection of publications from Harris Center researchers from 2012 to 2016, arranged in chronological order with the most recent at the top. Click on a title for the PubMed summary of the article.
How Does the Level of Nerve Root Resection in En Bloc Sacrectomy Influence Patient-Reported Outcomes? van Wulfften Palthe OD1, Houdek MT, Rose PS, Yaszemski MJ, Sim FH, Boland PJ, Healey JH , Hornicek FJ, Schwab JH, Clin Orthop Relat Res. 2016 Mar 18
Characteristics and Patterns of Metastatic Disease from Chordoma Young VA, Curtis KM, Temple HT, Eismont FJ, DeLaney TF, Hornicek FJ, Sarcoma. 2015;2015:517657.
CSPG4 as a prognostic biomarker in chordoma Schoenfeld AJ, Wang X, Wang Y, Hornicek FJ, Nielsen GP, Duan Z, Ferrone S, Schwab JH. Spine J. 2015 Dec 9. pii: S1529-9430(15)
Chordoma: an update on the pathophysiology and molecular mechanisms Sun X, Hornicek F, Schwab JH. Curr Rev Musculoskelet Med. 2015 Dec;8(4):344-52.
High-dose proton-based radiation therapy in the management of spine chordomas: outcomes and clinicopathological prognostic factors. Rotondo RL , Folkert W, Liebsch NJ, Chen YL , Pedlow FX , Schwab JH , Rosenberg AE , Nielsen GP , Szymonifka J, Ferreira AE, Hornicek FJ , DeLaney TF . (2015) J Neurosurg Spine. 2015 Dec;23(6):788-97.
[18F]-Fluoromisonidazole Positron Emission Tomography/Computed Tomography Visualization of Tumor Hypoxia in Patients With Chordoma of the Mobile and Sacrococcygeal Spine. Cheney MD, Chen YL, Lim R, Winrich BK, Grosu AL, Trofimov AV, Depauw N, Shih HA, Schwab JH, Hornicek FJ, DeLaney TF. Int J Radiat Oncol Biol Phys. 2014 Dec 1;90(5):1030-6.
Long-term results of Phase II study of high dose photon/proton radiotherapy in the management of spine chordomas, chondrosarcomas, and other sarcomas. DeLaney TF, Liebsch NJ, Pedlow FX, Adams J, Weyman EA, Yeap BY, Depauw N, Nielsen GP, Harmon DC, Yoon SS, Chen YL, Schwab JH, Hornicek FJ. J Surg Oncol. 2014 Aug;110(2):115-22.
Genotyping Cancer-Associated Genes in Chordoma Identifies Mutations in Oncogenes and Areas of Chromosomal Loss Involving CDKN2A, PTEN, and SMARCB1. Choy E, MacConaill LE, Cote GM, Le LP, Shen JK, Nielsen GP, Iafrate AJ, Garraway LA, Hornicek FJ, Duan Z. PLoS One. 2014 Jul 1;9(7)
Prognostic significance of miRNA-1 (miR-1) expression in patients with chordoma. Duan Z, Shen J, Yang X, Yang P, Osaka E, Choy E, Cote G, Harmon D, Zhang Y, Nielsen GP, Spentzos D, Mankin H, Hornicek F.J Orthop Res. 2014 May;32(5):695-701
Tissue microarray immunohistochemical detection of brachyury is not a prognostic indicator in chordoma. Zhang L, Guo S, Schwab JH, Nielsen GP, Choy E, Ye S, Zhang Z, Mankin H, Hornicek FJ, Duan Z.PLoS One. 2013 Sep 23;8(9)
Definitive High Dose Photon/Proton Radiotherapy for Unresected Mobile Spine and Sacral Chordomas. Chen YL, Liebsch N, Kobayashi W, Goldberg S, Kirsch D, Calkins G, Childs S, Schwab J, Hornicek F, Delaney T. Spine (Phila Pa 1976). 2013 Apr 19
Establishment and characterization of a novel chordoma cell line: CH22. Liu X, Nielsen GP, Rosenberg AE, Waterman PR, Yang W, Choy E, Sassi S, Yang S, Harmon DC, Yang C, Schwab JH, Kobayashi E, Mankin HJ, Xavier R, Weissleder R, Duan Z, Hornicek FJ. J Orthop Res. 2012 Apr 13. doi: 10.1002/jor.22113
To make an appointment, or for inquiries or assistance, contact the patient coordinator at 617-724-8193.
If you are coming from outside the United States please contact the International Patient Center first for assistance in arranging your visit.
The Harris center is located on the main Mass General campus in the Yawkey Center for Outpatient Care, Yawkey 3B, 55 Fruit St, Boston Mass 02114.
EDUCATIONDoctor of Nursing Practice (DNP), Simmons CollegeUndergraduate and Graduate degrees: Boston College, Chestnut Hill, MA
CLINICAL DEPARTMENTSOrthopaedic Oncology SurgeryCenter for Sarcoma and Connective Tissue OncologyStephan L. Harris Center for Chordoma Care
CLINICAL INTERESTS - Benign and malignant (sarcoma) bone and soft tissue tumors - Patient Education: encompassing knowledge of the disease, adjuvant treatment, surgery and rehabilitation - Preparation for surgery and its aftermath; impact on quality of life - Pain Management
Anne Fiore began her nursing career at Mass General Hospital in 1978. She began as a staff nurse and held various nursing positions through subsequent years, including Clinical Teacher and Clinical Nurse Specialist. She joined the Department of Orthopaedics, Orthopaedic Oncology Surgery, in 1992. Her passion through the years has been patient education: preparing patients and their families for surgical management of their tumors. She is the consistent source of psychosocial support for these patients and their families.
Anne obtained her Doctorate in Nursing Practice with a research focus on the impact of complex pelvic and spine tumor surgeries on patients’ daily living and quality of life. Her clinical practice involves a biopsychosocial model of care.
Anne had the privilege of caring for Mr. Stephan Harris. At the time of his diagnosis, management of chordoma was primarily surgery. Now, treatment has dramatically improved, involving a multidisciplinary team approach, all focused on chordoma care, including musculoskeletal pathologists and radiologists, oncology surgeons (ortho, neuro, ENT, general), medical and radiation oncologists, nurse practitioners and nurses specializing in surgical/medical oncology.
Anne established the first Chordoma Clinic in the newly established Stephan L. Harris Center for Chordoma Care on April 2, 2009. Watching patients interact with each other and supporting each other gave her great pleasure, since the goal of the Center, according to Mrs. Harris is “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”.
We all know how supportive the presence of a loved one/family member is to the overall care of a patient. Anne recalls that Mr. Harris was never alone - his wife was by his side at all times. Anne’s doctoral research confirmed this - the importance of family support following these complex tumor surgeries. It is the Center’s goal to care for family members of the patients since the impact of these surgeries affect them as well. Another finding of Anne’s research confirmed the need for intense preparation for the surgical experience (hospital stay and rehab) and coping with discharge to home and their new normal.
In 2010, the creation of the Stephen L. Harris Chordoma Center was honored by the Cancer Center’s the One Hundred. Each year, they honor 100 Everyday Amazing individuals and groups — caregivers, researchers, philanthropists, advocates and volunteers from around the globe — whose commitment to the fight against cancer inspires us all to take action. In 2017, Anne was honored as an individual caregiver by the One Hundred.
In addition, Anne has received four Partners in Excellence awards. In 2004, she received the Durante Award for Exemplary Care and Service with Cancer Patients. Then in 2016, at the Mass General Clinical Research Day, Anne’s doctoral research earned the Orthopedic Clinical Research Award. And in 2017, the Schwartz Center for Compassionate Healthcare recognized Anne for her dedication to strengthening relationships between patients and their healthcare providers.
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