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Chordoma

Chordoma is a rare cancerous tumor that can grow anywhere on the spine but is most commonly found at the base of the skull or the base of the spine near the tailbone. It is thought to arise from remnants of the notochord, which is part of the developing spine.

Chordomas are slow-growing tumors that may cause problems over time by growing into surrounding areas or by spreading to distant organs. As they gradually spread into the surrounding bone, muscle and other tissues, they may begin to put pressure on the brain or spinal cord. This can cause one or more of the following symptoms:

  • Tumors anywhere in the spineback pain; pain, weakness, or numbness in the arms or legs; difficulty walking; or difficulty using hands
  • Tumors in the skull – double vision and headaches; difficulty swallowing (dysphagia)
  • Tumors in the tailbone – Pain; bowel and bladder problems; numbness in the saddle area (upper inner thighs, groin area, buttocks or genitals)

Chordoma: what you should know

  • Usually, the cause is genetic. Chordoma has been linked to changes in a specific gene called the T gene. People with a family history of the disease also appear to be at increased risk. For people with chordoma who don’t have changes in the T gene or a family history of chordoma, the cause is unknown.
  • The tumors can recur (come back) in their original location, even after successful treatment. To minimize this risk, it is important that the tumor be removed in one piece during the first surgery.
  • About 40 percent of the time, the cancer metastasizes (spreads) to other parts of the body — most commonly the lymph nodes, lungs and liver.

How can I get help for chordoma?

See your primary care doctor if you experience any of the following symptoms:

  • Back pain that doesn’t go away and is worse at night
  • Pain, weakness or numbness in the arms or legs
  • Difficulty walking
  • Difficulty using your hands
  • Double vision and headaches
  • Difficulty swallowing (dysphagia)
  • A visible or palpable lump on the tailbone
  • Bowel and bladder problems
  • Numbness in the saddle area (upper inner thighs, groin area, buttocks or genitals)

Many of these are symptoms of multiple conditions, so it’s important to be evaluated by a doctor to get an accurate diagnosis. If you or a loved one is diagnosed with chordoma, your doctor will refer you to a specialist at Rush who specializes in treating these rare cancers.

Care for chordoma at Rush

Chordoma is challenging to treat because the tumors are usually very near the brain and/or spinal cord. At Rush, people with these rare and complex tumors are cared for by teams of specialists. Your care team may include the following specialists:

Your care team will design a treatment plan based on your specific needs, which may involve one or more of the following:

  • Most treatment plans start with surgery to remove as much of the tumor as possible:
    • For chordomas at the base of the skull, skull base surgeons at Rush can often remove the tumors through the nostril instead of using a large incision — a minimally invasive approach that enables patients to go home sooner, and recover faster and with less pain.
    • Chordoma anywhere in the spine needs to be removed surgically — sometimes all at once, and sometimes with two separate procedures. Your care team will determine the best approach for you based on the location and size of your tumor.
  • Radiation therapy (proton beam radiation or stereotactic radiosurgery) is commonly used for these reasons:
    • Before surgery, to improve the likelihood that the tumor can be taken out completely in one piece
    • After surgery, to destroy any remaining tumor cells
    • To treat tumors that recur (come back)
    • To try and slow the growth of tumors that can’t be removed with surgery
  • Rehabilitation. Sometimes, surgery to remove a chordoma can affect a person’s ability to speak or perform daily tasks, or bowel or bladder function. In these cases, you may be referred for one or more of the following:

Why choose Rush for chordoma care

  • The orthopedic surgery and neurological surgery programs, both of which include doctors who treat chordomas of the spine and tailbone, are consistently ranked among the best in the nation by U.S. News & World Report.
  • Specialists at the Coleman Foundation Comprehensive brain tumor and spine tumor clinics at Rush have experience treating chordoma and many other types of tumors.
  • The specialists at the Rush Skull Base Center collaborate to provide the least invasive but most effective treatment possible, including minimally invasive surgery to remove the tumors and targeted radiation therapy that kills microscopic tumor cells without harming healthy surrounding tissue.
  • The Rush University Cancer Center received the 2011 Outstanding Achievement Award from the American College of Surgeons' Commission on Cancer. Rush received this triennial award all three times since the award was created in 2004. The award recognizes programs that excel in providing quality cancer care.

Departments and programs that treat this condition