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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.

Emotional impact of a brain tumor

Coping with a brain tumor can be 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 know that you are not alone. It is possible to find a way to accept life’s latest development and focus your energy on adjusting to this new reality.

Although everyone’s exact emotional response is unique, many people with a brain tumor report going through the same six phases. All are common.

Shock

Nothing quite prepares you for the moment when you hear the words “you have a brain tumor”. You may feel numb or confused. Do not be surprised if your first reaction is a blank stare and a feeling of dissociation (the state of being or feeling disconnected) instead of an emotional outburst. This is a defense mechanism your mind uses to avoid feeling overwhelmed.

Denial

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.

Anger

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.

Guilt

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.

Acceptance

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 connecting with other brain tumor patients, survivors, and caregivers through support groups, online support communities, and peer connections.

Adjusting to the “new normal”

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.
  • Set goals and priorities for yourself. Create checklists of what you have accomplished and what still needs to be done. Take pride in the small wins.
  • Use visual and auditory tools, such as color-coding or a timer, to help you complete tasks
  • Stay involved with family, friends, or religious and/or community groups where possible – 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. Consult a nutritionist to understand what healthy dietary changes are best for you.
  • 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.
    • Prefer to connect one-on-one? Get paired with an ABTA Mentor, a trained volunteer who has been through a similar experience and can provide social and emotional support. Learn more here.

Diet & nutrition

When diagnosed with a brain tumor and undergoing treatment, you may experience:

  • Nausea
  • Vomiting
  • Loss of appetite
  • Change in taste
  • Diarrhea
  • Constipation

While it may not always be easy, having a healthy, balanced diet 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. When building a healthier diet plan, look at your current eating habits with a dietitian or nutritionist to develop a plan that best meets your personal needs. What works for one person, may not work for you. A drastic change in diet is not recommended. Even small changes can have a positive impact on your health.

Here are some dietary tips for tackling nausea when living with a brain tumor:

  • Eat small, frequent meals – instead of eating three large meals, which can seem daunting when you don’t have an appetite or are feeling sick to your stomach, have six to eight smaller meals during the day.
  • Choose bland foods when coping with nausea or diarrhea – yogurt, toast, bananas, applesauce, hard-boiled eggs, potatoes, etc.
  • Eat more calorie-dense foods when coping with lack of appetite – full fat yogurt, proteins, protein bars/shakes
  • Drink plenty of fluids – sip liquids throughout the day
  • Eat on a schedule rather than non-existent hunger cues when coping with lack of appetite
  • Try food swaps when coping with taste and smell changes – fresh fruit for canned, chicken for red meat, try something new
  • Add fiber to your diet and stay hydrated when coping with constipation. Avoid gas-forming foods such as beans, broccoli, cauliflower, onions, garlic, etc.
  • For constipation: avoid acidic juices (tomato, orange) and greasy, fried foods, try crackers and pretzels, keep your potassium up with bananas and sports drinks
  • Talk to your doctor and/or dietician – there may be medications, supplements, or specific dietary changes that are beneficial for you

Tips for a healthier diet

Healthy eating consists of the overall balance of your diet over weeks, months, and years and is a balance of protein, carbohydrates, fluids, healthy fats, and fruits and vegetables. These foods should be ones you enjoy and include as much variety as possible.

Protein

Protein is important for the growth and repair of all cells in your body, including red blood cells, white blood cells, muscles, and immune factors. During periods of stress (such as surgery and treatment) your body will need more protein.

Carbohydrates

Consist of sugars and starchy foods and provide energy. Starchy foods are a major source of fiber and are important in keeping your digestive system regular. Whole grains are an excellent choice because they retain all of their nutrients, including fiber, phytonutrients, vitamins, and minerals.

Fluids

Good hydration is vital for your body to work properly. Generally, 6-8 (8oz) glasses is recommended for adequate hydration.

Healthy fats (monounsaturated)

Fats provide energy, absorb vitamins, and protect your organs. Examples include oily fish (trout, salmon, tuna), olive and canola oil, nuts and seeds, avocado and olives

Fruits and vegetables

Phytonutrients help support your immune system and are located in fruits and vegetables. It’s important to vary the colors of your fruits and vegetables to vary your phytonutrient intake.

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.

Looking for more tips on developing a healthy diet? Watch this webinar on Diet and Nutrition for Brain Tumor Patients

View our educational flyer “Super Foods for the Brain” in English or Spanish.

Exercise

Staying active can help you feel better, reduce fatigue, build your strength, and better cope with treatments and subsequent side effects. You do not need to adopt a strenuous workout routine to do this. Try gentle, low-impact exercises, such as walking, gardening, or swimming. Go at your own pace. Even five minutes of gentle exercise can help to:

  • Increase energy
  • Improve feeling of wellbeing
  • Enhance sleep quality
  • Reduce pain

In addition to physical exercise, try these tips and techniques to manage stress, and improve your mental and emotional well-being:

  • Practice mindfulness and meditation.
  • Use relaxation techniques such as:
    • Progressive muscle relaxation – focus on slowly tensing and relaxing each muscle group. Tense your muscles for about 5 seconds and then relax for 30 seconds and repeat.
    • Visualization – form mental images to take a visual journey to a peaceful, calming place or situation. Incorporate as many senses as you can, including smell, sight, sound, and touch. 
    • Other techniques such as deep breathing, massage, aromatherapy, music and art therapy, yoga, etc.
  • Try journaling. This can help you get out your thoughts and feelings and can also be used to track your symptoms, medications, and appointments.
  • Engage in your favorite activities or take up a new hobby.

Addressing ongoing medical needs

It is normal for patients to experience some concerns and challenges long after their initial diagnosis and treatment. Some patients may develop side effects months or even years after treatment has been completed. These are known as “late effects”. Chemotherapy, surgery, and radiation have the potential of causing late effects. Adjusting to the new normal can be frustrating and isolating, but you are not alone. Your medical team can help you to better understand these late effects, how to treat them, and help you weigh the benefits of the treatment against the risks. Understanding common late effects and what to look out for can help you and your loved ones to be better prepared for the future.

Participating in research

Several brain tumor patients, survivors, and their loved ones want to know how they can participate in brain tumor research.  Here are a few ways:

Brain Tumor Project

Participation in this project helps to make discoveries that can lead to changes for future treatments and to have a better understanding of the disease.

Low Grade Glioma Registry

Participation in this registry can help to understand why some people develop an LGG and others do not.

Gliogene

If you and a biologically related family member have been diagnosed with a glioma you can participate in this study and help to identify similar genes in families with brain cancers.

NCI Symptom Tracker

This app was developed specifically for brain tumor patients and caregivers to help track and manage symptoms and self-care activities.

Clinical Trials

Participation in clinical trials may provide an opportunity to obtain a treatment not otherwise available and can benefit future patients by providing more knowledge about the disease, even if there may not be a direct benefit to the patient participating.

Returning to work or school

Many people can and do return to work or school after a brain tumor diagnosis. Others may feel this could interfere with their recovery or some may feel drawn to spend more time with loved ones. There is no “right” answer. 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 may look and sound 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

Everyone recovers on a different timeline depending on factors such as tumor type, tumor grade, location, treatments, and overall health. Return to work gradually and work with your medical team to help create realistic timelines that you can relay to your supervisor. 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:

  • Create daily to-do lists. Create a list of achievable tasks you can accomplish each day. Update the list and check off what you’ve completed. Celebrate those accomplishments!
  • Surround yourself with affirmations. Affirmations are inspiring or useful messages that you want to remind yourself of. They can motivate and inspire you to act or think a certain way.
  • Remove distractions. Use app or website blockers to avoid distracting sites and social media so that you can focus on what’s most important.
  • Take breaks. Take advantage of your breaks to step away from work. Go for a walk, read a book, or meet up with a coworker or friend to catch up. Allow yourself space to reset and refresh before returning to work.

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 physical or mental impairments that limit 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:

  • Job-sharing
  • 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

View our educational brochure “Returning to Work After a Brain Tumor Diagnosis: Accessing Reasonable Accommodations”

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.

For students:

Contact your school’s Office of Services for Students with Disabilities (SSD). They are there to support students who may have special needs due to medical reasons. Your school’s SSD office will work with you to determine what accommodations you may need to make your return to classes an easier transition. Examples of accommodations you can receive include extended deadlines or time for exams, flexible attendance to allow time off for appointments and treatments, assigned note-takers, and more.