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COVID-19: What the Brain Tumor Community Needs to Know

This information was last reviewed on May 20, 2022.

A core value of NBTS is “Patients First.” As such, we are committed to providing helpful, accurate, timely, and reliable content to our community regarding coronavirus (COVID-19). Below is the information we have compiled, in one easy-to-access spot, to help you better understand our response to COVID-19, how to protect yourself and others, and what resources are available for behavioral health support.

The situation with COVID-19 is fluid and information is, at times, overwhelming. We will continue to provide to our community facts you can count on as we navigate the road ahead together.

COVID-19 and Brain Tumors – Frequently Asked Questions

COVID-19 is a novel form of a large family of viruses called coronaviruses. The illness causes flu-like symptoms, with the major complication arising from impacts to the respiratory system.

The disease can spread from person to person, through small droplets from the nose or mouth that may spread when a person coughs or sneezes. Another person may catch COVID-19 by breathing in these droplets or by touching a surface that the droplets have landed on and then touching their eyes, nose, or mouth.

Individuals over the age of 60 and those with chronic conditions and/or compromised immune systems are likely at higher risk for contracting the virus as well as experiencing a more severe illness after infection. Many brain tumor patients, especially malignant brain tumor patients, are considered high risk. Chemotherapy and radiation can compromise a patient’s immune system, making them more susceptible to COVID-19.

According to the CDC, the virus that causes COVID-19 is constantly changing, and new variants of the virus are expected to occur. Sometimes new variants emerge and disappear. Other times, new variants persist. Numerous variants of the virus that causes COVID-19 are being tracked in the United States and globally during this pandemic. Watch the CDC’s educational video “What You Need to Know About Variants” to learn more.

For a comprehensive collection of information regarding COVID-19, visit the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the National Cancer Institute (NCI) – What People with Cancer Should Know for more information.

According to the CDC, a third primary dose is a third dose of an mRNA vaccine, which completes the primary series for people who are moderately or severely immunocompromised. A third primary dose may prevent serious and possibly life-threatening COVID-19 in people who may not have responded to their two-dose mRNA COVID-19 vaccine primary series. People who are moderately or severely immunocompromised who have low or no protection after two doses of mRNA vaccines may have an improved immune response after a third primary dose of the same vaccine. Getting a booster enhances or restores protection against COVID-19, which may have decreased over time.

The National Comprehensive Cancer Network (NCCN)* COVID-19 Vaccination Advisory Committee recommends COVID-19 vaccination for all patients with cancer, with a preference for mRNA-based vaccines. You can view the NCCN COVID-19 vaccination guide for people with cancer for additional information.

The CDC has also issued guidance regarding COVID-19 vaccines for moderately or severely immunocompromised people.

*NCCN is a nonprofit alliance of 31 leading cancer centers devoted to patient care, research, and education.

The CDC recommends the following:

How do I protect a family member who has a condition or is taking medications that weaken their immune system?

  • Get vaccinated yourself. COVID-19 vaccines reduce the risk of people getting COVID-19 and can also reduce the risk of spreading it.
  • People who have a condition or are taking medications that weaken their immune system may NOT be fully protected even if they are fully vaccinated. They should continue to take all precautions recommended for unvaccinated people, including wearing a well-fitted mask until advised otherwise by their health care provider.
  • If you live with someone who has a weakened immune system or is at increased risk for severe disease, you might choose to wear a mask in all indoor public settings regardless of the level of transmission in your area.

If you are receiving treatment for a brain tumor, you may need to travel to your doctor’s office or hospital for medical care. If so, consider these precautions:

  • Be extra vigilant about hand hygiene and not touching your face.
  • Ask your health care providers and caregivers to wash their hands before treating you.
  • Make a plan with your doctor to monitor for symptoms.
  • Ask your doctor if a scheduled visit/consultation can be conducted by phone, teleconference, or other telehealth measure.
  • Remind friends and family to stay away from you if they’re sick, or recently may have been in contact with someone who is presumed to have COVID-19.
  • Make a plan with your caregiver or other loved ones in case you get sick.
  • Make a plan with your employer to work from home.
  • Stock up on groceries and extra medications.

You may see restrictions at your treating hospital to protect patients and staff. You may want to visit their website or call your treatment team before your next appointment so you are prepared for any changes.

  • Your health care facility may have reduced entry points into the hospital.
  • Your health care facility may restrict visitors under a certain age from entering the building.
  • Your health care facility may screen you for COVID-19 symptoms over the phone before your appointment and once you arrive for your appointment.
  • If your health care facility is not allowing a caregiver or family member to accompany you to your appointment, check with your health care team to see if they can join you by speakerphone or video.
  • If you need blood drawn for your regular routine lab tests you may be able to do this at home. Check with your health care team.

Health care providers are turning to telehealth solutions for conducting certain services remotely. Check with your care team and health insurance provider to see if this is available to you, appropriate for you, and covered within your plan.

If telemedicine is an option for you, below are some tips and suggestions for preparing for a virtual appointment:

  • Check your equipment. You will need a smartphone, tablet, or computer with video, audio, a microphone, and a reliable Wi-Fi connection.
  • Test your equipment ahead of the appointment to be sure you can properly operate the video, audio, and microphone components.
  • Plug in your device so you do not lose power during your appointment.
  • Adjust the lighting so you are easily seen by your health care provider. Avoid light in the background that may make it difficult to see you.
  • Find a quiet place with minimal background noise and as few distractions as possible.
  • Outline what you would like to talk about including symptoms, changes in medication, how you are feeling overall mentally and physically, general notes, and questions for your health care provider.
  • Have a notebook and pen ready to write down things you want to remember or answers to your questions.
  • Write your doctor’s number on your notebook should a technical issue arise.
  • Practice by taking five minutes to do a run-through with equipment, the space where you will be, and lighting. It can help reduce any uncertainty about a telemedicine visit.

For more information visit: National Cancer Institute (NCI) – What should I do about getting treatment?

According to the NCI, the effect of the COVID-19 pandemic on trials varies depending on where you live. In regions with fewer cases of COVID-19, clinical trials may not be greatly impacted. In these places, patients are still getting treatment in trials and new patients can join trials.

In places with many more COVID-19 cases, some sites may have stopped enrolling new patients for a while. But they continue to focus on caring for patients who are already in trials.

The NCI Cancer Clinical Trials during COVID-19: Information for People with Cancer resource page will answer questions about conducting clinical trials during the pandemic and what to do if you are interested in enrolling or are currently enrolled.

If you are currently enrolled in a clinical trial, call your research team and follow their guidance. You can also learn more about how brain tumor trials have been impacted by reading the National Brain Tumor Society article “Innovating Brain Tumor Clinical Trials: Lessons Learned During the COVID-19 Experience.”

NCCN COVID-19 Vaccination Guide for People With Cancer states that people with cancer should continue to follow the recommendations to prevent COVID-19. Caregivers, family, and close contacts should wear masks, maintain social distance, wash your hands, avoiding crowds, minimize travel, and taking any other preventive measures.

According to the Public Health Communications Collaborative, along with getting vaccinated and boostered, experts recommend upgrading your mask if you want optimal protection. You can learn more about the levels of protection different masks provide by viewing their resource: What Mask Should I Wear?

To learn more, visit the CDC’s resource page: Using Masks to Slow the Spread of COVID-19

The CDC provides several resources listed below to inform the public on the latest information regarding COVID-19.

As cases are expected to continue to rise, understanding when, how, and where to receive a COVID-19 test is critical. Information on these questions and others related to testing are answered in the CDC resources linked below:

A stressful situation like an infectious disease outbreak that requires social distancing, quarantine, or isolation can cause a variety of reactions in different people. You may feel:

  • Anxiety, worry, or fear
  • Concern
  • Uncertainty or frustration
  • Loneliness
  • Anger
  • Boredom and frustration
  • Uncertainty or ambivalence
  • A desire to use alcohol or drugs to cope
  • Symptoms of depression
  • Symptoms of post-traumatic stress disorder (PTSD)

If you or a loved one experience any of these reactions for 2 to 4 weeks or more, contact your health care provider or one of the resources below. For more information on COVID-19 and behavioral health, visit:

Substance Abuse and Mental Health Services Administration

  • SAMHSA’s Disaster Distress Helpline Toll-Free: 1-800-985-5990 (English and Español)
  • SMS: Text “TalkWithUs” to 66746
  • SMS (Español): “Hablanos” al 66746
  • TTY: 1-800-846-8517
  • Behavioral Health Treatment Services Locator Website: https://findtreatment.samhsa.gov/

Stay Informed & Connected