Know the Facts and Get Help
Understanding Brain Tumors
While it is normal to feel scared, insecure, or angry about a brain tumor diagnosis, you can empower yourself to cope by taking this one step at a time. The information in this section can help you get started in understanding brain tumors.
Making a decision about treatment can feel overwhelming. In a short time, you are called upon to make critical decisions about your future, many of which are confusing and frightening. Explore this section to learn more about the treatment options available to you.
MANAGING SIDE EFFECTS
In many cases, treatment for a brain tumor comes with side effects.
Not everyone experiences the same side effects so you should keep notes about how you feel. Work closely with your physicians and nurses to find the best ways to help you feel better during treatment and beyond.
The location of a brain tumor plus the surgical and other methods used to remove and treat the tumor will influence the type of symptoms and side effects that occur. Symptoms and side effects also vary according to a person’s overall health and how well they handle treatment.
Possible side effects include:
Finding Support & Coping
When you are making treatment decisions and learning how to manage your diagnosis, considering your quality of life is important. Learn more about coping with a diagnosis and reaching your quality of life goals and in this section.
Financial & Family Considerations
Treatment and recovery are only a part of living with a brain tumor. There are also practical issues such as work, finances, and family. While your health care team can make suggestions to guide you through these issues, ultimately, these are personal decisions.
Some areas to consider are:
GOING BACK TO WORK
Many people, should they choose to return to work, experience career changes. Your co-workers may also have questions regarding your health and your ability to work. It’s also crucial to know the employment laws in your state, and how to discuss your health with your employer.
Managing medical costs is a big concern amongst families. You will need to coordinate your finances without getting overwhelmed. Click the icon below to find additional resources to assist you with your finances.
Regardless of your health, it’s helpful to prepare for the future legal documents such as a will, health care proxy, power of attorney, or living will.
Over half the inquiries that we receive come from people who are caring for a loved one with a brain tumor. Caregivers have a wide range of needs, just as patients do, and those needs may change over time. We hope that these resources will be helpful as you navigate this journey with your loved one.
CONNECT WITH ANOTHER CAREGIVER
Imerman Angels 1-on-1 Cancer Support carefully partners caregivers to create one-to-one connections with other caregivers and survivors. These one-to-one relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.
National Brain Tumor Society has a partnership with CaringBridge, a charitable nonprofit organization providing free, private websites that connect families and friends during a serious health event, care, and recovery. A CaringBridge website gives people facing a health journey a place to provide updates, post photos, and receive messages of hope and encouragement in a guestbook. To learn more, please visit www.caringbridge.org/braintumor.
CAREGIVERS PROJECT HANDBOOK
The Caregivers Project, a collaboration between the UCSF Osher Center for Integrative Medicine and the UCSF Department of Neurological Surgery, has released Orientation To Caregiving, a handbook developed to provide easily accessible and accurate information to family caregivers helping to care for loved ones with brain tumors. The handbook covers the full range of issues faced by family caregivers, including managing physical symptoms, caring for your loved one at home and in medical facilities, communicating with healthcare providers, managing emotional distress, supporting the caregiver, and handling financial and legal issues.
Tools & Publications
Easily view, download, and print helpful tools and publications like Top Ten Tips for Recently Diagnosed Patients, Questions to Ask Before Treatment, Employment Laws & Financial Resources, and more.