Explore This Program

Overview

The Hemangioblastoma Center at Massachusetts General Hospital provides comprehensive care for patients with both sporadic and familial (hereditary) hemangioblastomas as well as the condition called hemangioblastomatosis. The center is a collaboration between the Department of Neurosurgery and the Mass General Cancer Center.

Our goal is to use cutting edge research and clinical protocols to treat every patient with an individualized treatment plan.

What Is a Hemangioblastoma?

Hemangioblastomas are tumors that can form in the brain, spinal cord, root of the nerves and retina. Hemangioblastomas may be hereditary or may occur sporadically (without association with known genetic factors).

At the Hemangioblastoma Center, we see patients with von Hippel-Lindau (VHL)-related and non-VHL-related hemangioblastomas and hemangioblastomatosis.

  • VHL Disease: VHL is a rare genetic disease that can cause tumors to develop in many areas of the body. The tumors can be benign or cancerous and may cause many serious issues for patients. Patients with VHL disease are at risk of developing hemangioblastomas in the brain, spine, nerve roots and the eye (retina) as well as kidney cancer, pheochromocytoma (tumor of the adrenal glands), neuroendocrine tumors of the pancreas and other lesions.

  • Sporadic hemangioblastomas: Sporadic hemangioblastomas are not linked to any hereditary disease. They usually occur in a single location.

Sporadic or VHL-related hemangioblastomas have variable patterns of growth rate. Over time, growing hemangioblastomas can press on the brain and cause headaches, muscle weakness, tingling in the arms or legs, loss of senses and other problems for a patient. Hemangioblastomas have also been known to cause a loss of balance and a buildup of spinal fluid in the brain.

Evaluation

We provide comprehensive evaluation and appropriate genetic counseling and testing for VHL disease to identify whether a patient has sporadic or VHL-related hemangioblastoma.

Hemangioblastomatosis: This is a rare condition where hemangioblastoma cells are growing extensively in a part of the brain known as the leptomeninges and in the spine.

Retinal Angioma: The term “retinal angioma” has been used to refer to lesions that are most likely retinal hemangioblastomas. Retinal angiomas may indicate the presence of a genetic disease (VHL) or the existence of hemangioblastoma tumors in the brain or the spine. Our center sees and evaluates patients with retinal angiomas.

What to Expect

Prior to your arrival at the Mass General Hemangioblastoma Center, your medical records and imaging will be reviewed by your care team. At your appointment, you will first meet with a nurse practitioner and medical geneticist. You will then meet with your physicians, who will work with you to formulate a treatment plan. Depending on your needs, you may have a long-term follow-up by the center.

The decision of when and how to treat hemangioblastoma is made in the Hemangioblastoma Center by multidisciplinary a team of doctors specializing in treatment of this tumor. Your treatment may include:

  • Surgery
  • Radiation therapy
  • Targeted therapy and clinical Trials

A Multidisciplinary Care Team

The Hemangioblastoma Center is a collaborative program of the Department of Neurosurgery and the Division of Hematology-Oncology of the Mass General Cancer Center led by Othon Iliopoulos, MD, and Brian Nahed, MD, MSc, and includes clinicians trained in:

  • Medical oncology
  • Neuro-oncology
  • Neurosurgery
  • Radiation oncology
  • Genetics
  • Neuropathology

The clinic is made up of specialists with experience in treating hemangioblastomas, including:

  • Medical oncologists
  • Neuro-oncologists
  • Neurosurgeons
  • Radiation oncologists
  • Nurse practitioners
  • Geneticists
  • Social workers

Other Resources

Research

Massachusetts General Hospital researchers work on understanding the etiology of hemangioblastoma tumors and discovering effective treatments for the disease.

Researchers use cutting-edge molecular analysis of cells derived from human hemangioblastoma tumors, hemangioblastoma cell lines established at Mass General and animal models to discover and validate therapeutic targets for the disease.