Chordoma Foundation

Preparing for emergencies

Being prepared for an emergency situation — whether it be natural, manmade, or health-related — is important for everyone, but it is especially important for people with cancer.

During a health emergency, it is important that the medical professionals caring for you understand your health history, including the details of your chordoma treatment and your current status. During a natural disaster, it is critical to ensure that any ongoing treatment — whether for your chordoma or for side effects of treatment — is not interrupted. Additionally, you may be at higher risk for infections, bleeding, fatigue, and injury during emergencies depending on your current health.

Even if it feels like a lot of work, being prepared will be more than worth it if an emergency occurs.

To help prepare yourself and your loved ones, here are some important steps to take:

Get emergency contact information from your healthcare provider

Talk with your chordoma treatment team and your primary care provider about how to contact them quickly in the event of an emergency. If you are unable to contact them yourself, your caregiver or another medical professional will need to be able to do so on your behalf.

Make a plan with your family and friends

Talk with your family and friends, including your neighbors, so they can help you in the event of an emergency. They should know:

  • What critical health information needs to be provided to any medical professionals caring for you (e.g., health history, current medication list, contact information for your chordoma team) and where that information is stored so they can locate it quickly
  • What help you are likely to need during an emergency
  • Who can provide that help
  • What resources are available to assist you and them (e.g., local emergency management agencies and cancer organizations)

Prepare an emergency kit

Gather helpful items such as bandages, antiseptic, a few days’ supply of medications, face masks, hand sanitizer, thermometer, etc. Put them in a zip lock bag to keep them dry.

  • You can find a helpful list of items to keep in an emergency kit here.
  • Be aware that food and water may not be safe to consume after a disaster. Click here for safety tips on food and water use.
  • Include contact information for your local or national disaster assistance group, if one exists, in case you need help from them.

    Gather essential medical and health information

    This includes anything you might need in order to receive appropriate emergency medical care or continue with your chordoma treatment during a disaster. Use the list below to help you think about what might be helpful.

    What medical and health information do I need?

    We’ve created the following list to help you collect essential medical and health information. Keep a packet of this information with you at all times and provide one to your caregiver or family members. It can also be helpful to place a packet labeled “Emergency Health Information” in an obvious location in your home — such as taped to your refrigerator — so it can be found by family, neighbors, or first responders. (Click each section to expand.)

    Health history

    Click here for a health history form you can fill out and print.

    • Document your chordoma diagnosis, a brief history of your treatment, and a complete list of medications you take. You may also want to include notes on your current health status, including any areas of tumor that are being monitored and why, as well as any side effects you are managing such as hormone insufficiencies, bowel issues, difficulty swallowing, nasal flaps, etc.
    • Collect contact information for your chordoma doctors and any others whose help you may need during an emergency.
    • Note your current treatment status. If you’re receiving systemic therapy or radiation, keep documentation about where you are in your treatment cycle. If you are participating in a clinical trial, make sure you have information about the trial, including the trial ID number, the name of the principal investigator, names of any facilities where you receive treatment, and the exact treatment you are receiving.

    Survivorship care plan

    Include a copy of your cancer survivorship care plan, if you have one. Your plan might include information about follow-up schedules or medications you may be taking.

    Medical insurance card

    Carry your insurance card with you at all times, so you can contact your insurance provider in case you are displaced and need to seek care. Include copies in the packets.

    Medical Power of Attorney or Do Not Resuscitate (DNR) orders

    If you have either of these documents, include copies of them in your packets. Your wishes can only be followed if they are known to those helping you.

     

    Helpful links

    Chordoma-specific resources

    Medical professionals who are not familiar with chordoma might find the following guidelines and resources helpful:

    Health record collection services

    Health record collection services make it easy to keep all your records in one place that is easily accessed by you and can be shared with family members and medical providers with the click of a button.

    • Ciitizen, a company that makes requesting your medical records as easy, secure, and useful as it should be. On your behalf, Ciitizen handles the medical records request process and gathers all your records on their platform. They can request records from anywhere you’ve received care, including hospitals, private clinics, or imaging and diagnostic labs. Their goal is to make it easier for you to have a full picture of your medical history and, if you choose, share it with others.
    • Picnic Health is an online service that collects and electronically stores patients’ medical records, lab results, doctors’ notes, and CT or MRI images in a secure online platform. Their team works with healthcare providers to obtain the medical records and then creates a comprehensive health timeline that can be easily shared with physicians on the patient’s behalf.

    Chordoma Foundation Patient Navigators are available to help you prepare for emergency situations.

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