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 if it becomes available.

Comprehensive information on the virus

World Health Organization (WHO) COVID-19 outbreak page
U.S. Centers for Disease Control and Prevention (CDC) COVID-19 situation summary
Common Questions About the New Coronavirus Outbreak from the American Cancer Society
A Message to Patients with Cancer and Health Care Providers About COVID-19 from the U.S. Food and Drug Administration (FDA)

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 here:

Coronavirus: What cancer patients need to know from the Fred Hutchinson Cancer Research Center
The 2019 Novel Coronavirus (COVID-19): Key Facts and What It Means for People with Cancer from Memorial Sloan Kettering Cancer Center
Coronavirus: What People with Cancer Should Know from the National Cancer Institute
Why People with Cancer are More Likely to Get Infections from American Cancer Society

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

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 will likely be made more available in lieu of in-person visits, to help doctors continue to provide care to their patients. In early March 2020, telemedicine benefits were granted to all Medicare patients 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.

What should I do 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.
Put distance between yourself and other people if COVID-19 is spreading in your community.
Stay home when you are sick. If you are sick, follow these steps.
Cover your cough or sneeze with 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.
If you are sick, wear a facemask when around other people. You do not need to wear a mask if you are not sick.
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.

Chordoma Community Conference

We are closely monitoring the continuing developments pertaining to the novel coronavirus/COVID-19. We want to assure anyone planning to attend our upcoming International Chordoma Community Conference (ICCC) in Boston that your health and safety are our top priorities. We are tracking all travel restrictions issued by the U.S. government, as well as information and guidance from the U.S. Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO).

At this time, there is no plan to cancel or postpone the ICCC. However, due to the international nature of this conference and the preceding International Chordoma Research Workshop, we ask you to please be aware of the possibility of cancellation or postponement as the situation around the country and the world evolves and new information becomes available.

If cancellation or postponement becomes necessary, conference registration fees will be refunded in full, but we would not be able to reimburse you for the cost of travel you have already scheduled or purchased. We encourage you to consider refundable or changeable options for plane tickets, hotel rooms, etc. when making travel arrangements. The room block at the conference hotel, the Boston Marriott Cambridge Hotel, has a cancellation policy of 72 hours before check-in.

We will provide further updates in the coming weeks. Please don’t hesitate to contact us with any questions at events@chordoma.org.

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.