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Questions to ask about treatment

Chordoma is a complex disease to treat. Patients often wonder what types of questions they should ask their doctors to help them make the most informed decisions about their care.

We developed these lists of questions to ask about treatment with input from chordoma patients, caregivers, and the members of our Community Advisory Board on what they found important to ask their doctors. You may not need to ask all the questions on these lists and there may be questions you want to ask that are not listed, but we hope these will be a helpful starting point.

Question lists

Some helpful tips to consider:

  • Print out the list(s) of questions so you can take them with you to your appointments.
  • Take notes to help you remember important information discussed during your appointment.
  • Bring someone with you to your doctor visits to help take notes, process the information discussed, and clarify any questions or concerns.

New or suspected diagnosis

Including questions about the doctor’s experience with chordoma, diagnosis, surgery, and radiation

Get this list

Recurrent chordoma

Including questions about the doctor’s experience with recurrent chordoma, surgery, re-irradiation, and other options

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Advanced or metastatic disease

Including questions about systemic therapy and clinical trials

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Managing side effects

Including questions about how palliative care specialists can help with pain management, physical therapy, rehabilitation, and mental health counseling

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Pain management

Including questions about causes of pain and pain management options

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Integrative medicine

Including questions about complementary and alternative medicine

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Insurance and disability coverage

Including questions about treatment costs and disability benefits in the United States

Get this list

Contact a Chordoma Foundation Patient Navigator

Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.