Brain Tumor Support & Resources
You are not alone. The ABTA is here to help. We have a variety of resources, including general information about brain tumors and treatment, social support, and caregiving that can support you and your loved ones during this time.
Contact our CareLine
Call 800-886-ABTA (2282) or fill out our contact form and a CareLine staff member will be in touch within 24 business hours.
Available Monday through Friday from 8:30 a.m. to 5:00 p.m. CT.
ABTA CareLine staff can assist you with a variety of resources, including general information about brain tumors and treatment, social support, and caregiving. Some topics, however, exceed our scope. Please note the following:
- Medical information: ABTA does not have medically trained professionals available to answer medical questions or offer medical advice. Questions of a medical nature that cannot be answered through ABTA resources (i.e., ABTA website or other reputable online sources) should be directed to medical professionals.
- Financial assistance: The ABTA does not provide financial assistance to patients, families and/or caregivers. Please visit our website for a listing of financial aid resources offered by other organizations:
- Treatment referrals: The ABTA does not rate or endorse healthcare practitioners, facilities or organizations, nor does it hold opinions on the quality of practitioners or providers. CareLine staff make referrals to treatment centers that have dedicated brain tumor treatment programs, offer a variety of treatment modalities, and offer supportive services for brain tumor patients and caregivers.
View, download, or order our educational publications.
Watch a Webinar
We host webinars every month on different brain tumor-related topics. Browse through our webinar library.
Looking for one-on-one support?
ABTA CommYOUnity™ Connect is a free mentor matching service that pairs brain tumor patients, survivors, and caregivers with mentors who have been through a similar situation. Connecting with a mentor provides the opportunity to ask personal questions and receive support from someone who is uniquely familiar with the brain tumor experience. Our trained volunteer mentors offer social-emotional support and share their experience with brain tumor diagnosis, treatment, and care.
Find a Support Group
Find a support group near you.
Join ABTA Connections
Get support and encouragement in the ABTA’s private online support community.
Living with a Brain Tumor
A brain tumor diagnosis is a life-altering event. There is no “right” way to feel. There will probably be days when you feel upbeat and positive and other days when you will feel that your world has caved in. Uncertainty is among the most challenging aspects of a brain tumor diagnosis. Even with the best possible prognosis, you may be left wondering whether the tumor will return. Many people who live with a brain tumor or who are recovering from brain tumor treatment experience significant changes in the way they function. Your new “normal” may include making changes in the way you eat, the things you do, and even your sources of support. It may also mean rethinking your work and professional goals or looking at your life differently. Despite these challenges, many people living with a brain tumor report experiencing a profound sense of new meaning in their lives. Here are some tips to help you live well with a brain tumor:
- Take it one day at a time – Anxiety about the future is natural, but don’t get ahead of yourself. Try to focus on today.
- Set your computer to provide automatic date-and-time reminders for appointments and meetings
- Create checklists of what you have accomplished and what still needs to be done
- Use visual and auditory tools, such as color-coding or a timer, to help you complete tasks
- Get your family and friends involved – Keep yourself open to accepting support and assistance from those who are close to you.
- Complement your treatment with exercise and a healthy diet – A sensible exercise program combined with a healthy diet can help you with treatment-related fatigue, improve strength and mobility, and help you deal with anxiety and depression.
- Seek out a support community – It’s often helpful to talk with other people going through their own brain tumor journeys. Find a support group in your area or ask your health care team for a recommendation. The ABTA also has a free online support community, called ABTA Connections.
Diet & Nutrition
Eating well can combat fatigue, help you feel better, and keep your body strong so you can cope more easily with treatment side effects. It can also help you heal and recover from your treatment more easily. Your reaction to food may differ from someone who has the exact same diagnosis. Some people continue to enjoy eating and maintain a strong appetite. Others want to eat well but are unable to do so. During treatment, some people may experience nausea or vomiting. If you feel sick to your stomach between meals, it may help to eat six to eight small meals during the day rather than three large meals. Avoid foods that are very sweet, greasy, fried, or emit a strong smell. And be sure to talk with your doctor – there may be medication options or dietary changes that can help you.
Seven Keys to Healthier Diet
1. Remove White Food from Your Diet
White food tends to be processed food, low in nutrients and high in sugar. White bread is probably the easiest item to immediately identify and eliminate. But don’t remove all bread from your diet – grains can be an important source of fiber, selenium, and vitamins B and E.
2. Select Vegetables and Fruits with Vivid Colors
The more intense the color of a fruit or vegetable, the higher its nutritional content. Choose dark leafy greens, peas, edamame, or spinach for vitamins B and C, iron, protein, and fiber. Don’t shy away from canned or frozen fruits and vegetables, especially if they can help make your life easier right now. Frozen fruits and vegetables are also a healthy alternative.
3. Learn About Phytochemicals
Phytochemicals are nutrients derived from plants. They appear to stimulate the immune system, exhibit antibacterial and antiviral activity, and help your body fight cancer. Some food high in phytochemicals include onions, garlic, leeks, chives, carrots, sweet potatoes, apricots, tea, coffee, citrus fruits, cruciferous vegetables (broccoli, cabbage, kale, cauliflower), berries, beans, and whole grains.
4. Hydrate, Hydrate, Hydrate
Our bodies need at least 8 glasses of water a day. During chemotherapy, you need additional fluids to replace fluid lost through treatment side effects. The weight gain and puffiness caused by steroids might tempt you to skimp on your water, but avoiding water now will only worsen the side effects.
5. Eat Healthy Fat
Healthy fat, like Omega-3s, may increase the activity of the immune system’s natural killer cells. These cells fight off cancer cells. Flaxseed is the richest plant source of these healthy Omega-3 fats. Add 1-2 tablespoons of ground flaxseed or flaxmeal a day into your morning breakfast cereal, or use ground flaxmeal in a smoothie. Oily fish, such as lake trout, salmon, tuna, herring, and sardines, as well as canola and walnut oil, are all excellent sources of Omega-3 fats.
6. Follow the 80/20 Rule
No one can eat healthy all the time. If you can make healthy selections 80% of the time, you can allow yourself to make less healthy choices 20% of the time. Knowing you have some flexibility allows you to make healthier choices long term and not feel deprived.
7. Consult a Licensed, Registered Dietitian
Interested in learning more? Have a particular nutritional goal you are trying to meet? Speak to your doctor, or consider a personal consultation with a registered dietitian. Contact the Academy of Nutrition and Dietetics for the names of licensed dietitians in your area.
Emotional Impact of a Brain Tumor
Maybe you have just been told you have a brain tumor – or maybe you’ve been living with that knowledge for a while. You may feel that you are on an emotional rollercoaster; scared and angry one day, then hopeful and positive the next day. Your life will likely be different from what it was before, but if you are like most people, you will find a way to accept life’s latest development and focus your energy on adjusting to this new reality.
Emotional Effects of a Brain Tumor
Although everyone’s exact emotional response is unique, many people with a brain tumor report going through the same six phases. All are normal.
Nothing quite prepares you for the moment when you hear the words “you have a brain tumor” from your doctor. You may feel numb or confused. Do not be surprised if your first reaction is a blank stare and a feeling of dissociationThe state of being or feeling disconnected instead of an emotional outburst. This is a defense mechanism your mind uses to avoid feeling overwhelmed.
As you move forward from the initial shock, it is natural to deny that anything is wrong and act as if nothing happened. Denial is another defense mechanism the mind uses to avoid processing the full impact of a brain tumor diagnosis at one time.
When you stop blocking out the thoughts of your brain tumor diagnosis, anger might start to set in. You are not ready to accept this news. It is common to strike out at those you love the most, including your family, friends, and even doctors. When you begin to feel angry, see if you can communicate your feelings. There is nothing wrong with saying, “I am just so angry today.” Giving voice to your emotions enables you to address them and enlist others to help you through them.
On the surface, guilt does not appear to be a rational reaction to your diagnosis. Yet there is a good chance that at some point, you will begin looking inward for “reasons.” You may think, “If I had exercised more…if I hadn’t eaten all that junk food…if I had gone to the doctor the first time I had a headache…maybe it would all be okay.” You did not do anything to cause your tumor. Even the medical community is not sure why some people get brain tumors and others do not.
Anxiety & Depression
It is common to experience anxiety and depression as a result of a brain tumor diagnosis. If you are experiencing a fast heartbeat, loss of appetite, sleep disturbances, or overwhelming feelings of hopelessness and sadness that just won’t go away, let your doctor know. He or she may be able to give you guidance for working through these feelings, or connect you with other resources to help.
With time, most people with a brain tumor accept their diagnosis and become ready to meet the challenges of their treatment and new life. Although your brain tumor diagnosis will place you on a path you did not anticipate, clearly understanding your diagnosis, treatment options, and emotions can help you move forward with your life more easily. Learn ways others are coping by joining a brain tumor support group or by participating in a support group or online community with others who share similar experiences related to their brain tumor.
Returning to Work
Many people can and do return to work after a brain tumor diagnosis. Others choose to focus on recovery or decide to spend more time with family. There is no “right” answer. You need to look closely at your own needs, capabilities, and preferences and decide on the best choice for you.
Here are some strategies to help you return to work successfully.
Communicate Openly with Your Employer and Coworkers
Many people feel that their health is a private matter. However, it can be helpful to let coworkers know what is going on. If you do not reveal your condition, your coworkers may not understand why you may be behaving differently, even though you look and sound basically the same. Telling your coworkers about your diagnosis enables them to support you along your journey. A counselor, social worker, or supervisor can help you explore the best ways to let your coworkers know and how much to tell them.
Develop Strategies for Getting Work Done
Your brain needs approximately 18-24 months to heal, and you also may need time to recover physically and emotionally from your treatments. Create realistic timelines with your supervisor, and return to work gradually. Time is an important part of the process, so be patient.
Set Up Your Environment for Optimal Performance
There are many ways to create a work environment that can help you be more productive. Here are a few examples:
Know Your Limitations
Everyone has limitations. Yours may simply be more pronounced right now. Figure out what times of the day you have the most energy, and try to schedule your most challenging tasks during that time.
Develop Flexible Solutions to Your Work Challenges
Some people experience disabilities as a result of a brain tumor or treatment side effects. Disabilities are defined as a physical or mental impairment that limits life activities. Some common disabilities include short-term memory loss, difficulty walking, or problems with concentration. If you have any disabilities, your employer is required to help you make reasonable accommodations according to the Americans with Disabilities Act of 1990 (ADA). There are many ways to achieve reasonable accommodation:
- Flexible hours
- A temporary job coach
- Assistive technology
- Reassignment to a vacant position that is more suited to your abilities
- Additional unpaid leave for required medical treatment
Know Your Rights
The ADA prevents job discrimination for those with a qualifying disability and applies to all companies with 15 or more employees. According to the ADA, if you can perform the essential responsibilities of the job, the employer must make reasonable accommodations to allow you to perform the job, unless doing so would cause an undue hardship on the employer. If you need to look for new employment, employers cannot discriminate against you in hiring. If you think you have been discriminated against, call the Equal Employment Opportunity Commission (EEOC) at 800-669-4000.