Chordoma Foundation

Coronavirus (COVID-19) and chordoma

​As health officials continue to determine the best way to assess and manage the novel coronavirus (COVID-19) for the global population, the Chordoma Foundation is working to understand and address the impact it might have on our patient community.

While news about the outbreak is changing rapidly, knowing some basic facts about the disease, what can be done to prevent getting sick, and how it might affect you can be very empowering.

We have compiled the following list of resources to help you find information about COVID-19. Please check back to this page periodically. We will add new information as it becomes available.

Comprehensive information on the virus

  • COVID-19 pandemic page from the World Health Organization
  • Within the United States: COVID-19 information page from the U.S. Centers for Disease Control and Prevention (CDC)
  • Outside the United States: Click here for a list of national public health agencies where you can find the website for your country and access their COVID-19 information

Information about COVID-19 and cancer

Some evidence has indicated that people with cancer may be at higher risk for experiencing complications should they be infected with the coronavirus but at this point, there is not enough information to know for sure.

You can find more information about considerations for cancer patients in the following resources:

Guidance from the Chordoma Foundation Medical Advisory Board for chordoma patients and caregivers

Because this is a new virus, there are still many unknowns about how COVID-19 spreads, how it can be treated or prevented, and how it affects certain populations. The Chordoma Foundation Medical Advisory Board (MAB) notes that, while the situation around the world is changing on a daily basis, there are some potential impacts on chordoma patients and they have provided the following information and guidance.

How might the virus impact healthcare in general?

In areas where there are large numbers of people infected, the healthcare system may become overwhelmed by people who need care for severe COVID-19 symptoms. If this happens, it is possible that other types of care would be interrupted due to a number of factors, including:

  • ICU beds and other items such as ventilators may be needed by those hospitalized with the virus
  • Doctors from all disciplines, including surgeons and oncologists, could be required to provide care to COVID-19 patients
  • Surgeries that are considered elective may be postponed due to a number of factors, including social distancing restrictions and shortage of available medical staff or medical supplies. Most surgeries involving chordoma tumors would not be considered elective, but they may have to go through an approval process.

If you are currently receiving treatment, talk with your healthcare provider(s) about what would happen in the event you are unable to continue receiving care at that facility for a period of time.

If you are currently planning for treatment or anticipate needing treatment within the next several months, we suggest proactively talking with your healthcare provider about how the evolving situation could affect your care.

Additionally, many major medical centers and even some smaller clinics, including primary care practices, offer virtual, or telemedicine, visits. These services are now more widely available in lieu of in-person visits so that doctors can continue to provide care to their patients. In early March 2020, telemedicine benefits were granted to all Medicare patients in the U.S. as a result of the COVID-19 pandemic.

What should chordoma patients know about COVID-19?

Chordoma patients whose immune systems may be compromised due to treatment or other issues may be at higher risk. If you recently had surgery or radiation, are being treated with systemic therapies, are taking corticosteroids like dexamethasone, or are in some other way immunocompromised, you should talk to your doctors about what steps you should take to stay healthy.

As things progress, certain medical centers and clinical trial sites may be impacted. We will update this page with any new information we learn. In the meantime, you can stay up to date with your medical center by visiting their COVID-19 information page. We have put together a list, below, for many of the major centers. Email us at support@chordoma.org if you need help finding information for your center.

Ways to stay healthy

The best way to not get sick is to avoid exposure to COVID-19. Our MAB stresses that chordoma patients and caregivers should be vigilant in following the CDC’s guidelines on how to help protect yourself from being exposed:

  • Wash your hands! And wash them often, with soap and water, for at least 20 seconds. Read about the right way to wash your hands or watch this short video.
  • Use an alcohol-based hand sanitizer that contains at least 60 percent alcohol if soap and water are not available.
  • Avoid touching your eyes, nose, and mouth with unwashed hands.
  • Avoid close contact with people who are sick. If you are sick, follow these steps.
  • Put distance between yourself and other people.
  • Stay home as much as possible.
  • Cover your mouth and nose with a cloth face covering when you go out in public. It is possible to spread the virus even when you do not have symptoms.
  • Cough or sneeze into a tissue. Throw used tissues in the trash. If you don’t have a tissue, cough or sneeze into your arm. Immediately wash your hands. 
  • Clean and disinfect frequently touched objects and surfaces daily. More information on cleaning and disinfection is here.

If you have questions about coronavirus and chordoma, our Patient Navigators are here to help. They are available Monday through Friday from 8 AM to 5 PM Eastern Time.

Contact a Patient Navigator »

If you have symptoms consistent with COVID-19, please contact your healthcare provider.

2020 International Chordoma Community Conference

With the health and safety of our community in mind during the ongoing pandemic, we have made the decision to postpone our 2020 International Chordoma Community Conference. The conference will now be held on July 16-17, 2021, at the Boston Marriott Cambridge Hotel. We are disappointed that the conference cannot be held as planned, but the most important thing is that we all stay healthy. 

Contact us at events@chordoma.org with any questions. Please take good care of yourselves, and we hope to see you in Boston in July 2021.

Information from medical institutions

Many medical institutions have made information and guidance about COVID-19 available to their patients, including those listed below. If you do not see your medical center listed, visit their website or contact us at support@chordoma.org and we are glad to assist you.

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