Navigating Brain Tumor Symptoms: Managing Anxiety and Fear

For families confronting a brain tumor diagnosis, the emotional journey is often marked by significant anxiety and fear. Understanding how to manage these emotions is crucial for both the patient and their loved ones. This guide provides distress tolerance skills, practical advice, and support to help families navigate the emotional challenges of brain tumors.

Recognizing the Emotional Impact

Brain tumors can bring about emotional turmoil. Symptoms such as persistent headaches, ongoing fatigue, and changes in cognitive abilities can trigger distress. It’s important to acknowledge that feelings of anxiety and fear are normal responses to such life-altering changes. Many resources you come across may provide practical solutions, such as therapy, relaxation techniques, and developing community networks. These are all useful tips, however, acknowledging and validating your own emotions is just as important.

Give Yourself Space to Feel Your Feelings

When you are dealing with a brain tumor diagnosis, it is natural to want to stay strong, not only for yourself, but also for your child and family. This does not mean, however, ignoring your own difficult emotions that come with this unique and challenging experience. Giving yourself permission to feel your feelings, even if they are negative or uncomfortable, is one of the best ways you can not only be there for your family, but also yourself.

Anxiety, fear, and sadness are often seen as weakness, but they are completely normal reactions to the situation you have found yourself in. Trying to push these feelings away does not usually work to make them disappear.

Here is an example from Acceptance and Commitment Therapy of this idea: Try to do everything you possibly can, for the next 10 seconds, to not think about your left pinky finger. Do not think about it and do not notice any sensations in it.

Actively trying to avoid the thought and feeling of your left pinky finger can make it even harder to not feel or think about it. Once you let yourself notice it is there and stop trying to avoid it, it becomes easier to live with and the thought passes. The same thing applies to emotions, although it may take a little bit more work. Here are some ways you can make room for those negative emotions.

1. Acknowledge What You are Feeling: It is okay to say to yourself, “I am scared,” or “I feel so angry right now”. Labeling these emotions without guilt or judgment can make those emotions feel less out of control.
2. Let Yourself Grieve: A brain tumor diagnosis often brings substantial changes to your life, including routines, plans, and even your sense of control. It is completely okay to grieve those losses. Grieving does not mean giving up, it just means you are letting yourself process the reality of what is happening.
3. Set Aside Time to Feel: Life does not stop when something this big happens. There are still things to do, people to take care of, and responsibilities to manage. But even on the busiest days, it is important to carve out time to process how you are feeling. This could even be done while you are managing daily tasks and having a short, mindful check in with yourself.
4. Accept That Some Feelings are Sticky: Anxiety might not go away entirely, and that is okay. Over time, these feelings may soften or change, but there is no need to rush the process (like the left pinky example).

Letting yourself feel does not mean you are giving up or staying stuck in the negative. It means you are honoring the reality of the situation. You are giving yourself permission to be honest about how hard this is. When you allow yourself to feel the icky feelings, you also create mental space for hope, strength, and resilience. It is easier said than done but practicing these distress tolerance techniques can support healthier mental health and more positive emotions in a time when they may be hard to come by.

In addition to these strategies, there are also some more pragmatic ways that anxiety can be addressed.

Creating a Supportive Environment

1. Open Communication: Keeping communication open within the family helps everyone share their feelings and fears without judgment, reducing stress and the sense of isolation.
2. Professional Counseling: Engaging with a psychologist or counselor specializing in chronic illnesses like brain tumors can be invaluable. These professionals offer strategies to effectively manage emotional responses.
3. Educational Resources: Being informed about brain tumor symptoms and treatment side effects is empowering. Utilize educational resources from the Pediatric Brain Tumor Foundation to better understand the condition and reduce anxiety.

Practical Steps to Manage Anxiety

1. Establish Routines: A consistent daily routine can provide a sense of predictability and control, which is soothing during times of chaos.
2. Relaxation Techniques: Implementing stress-reduction techniques such as deep breathing exercises, meditation, or yoga can help alleviate anxiety. Family participation in these activities can enhance their effectiveness.
3. Healthy Lifestyle Choices: Maintaining a balanced diet, regular physical activity, and adequate sleep are essential for managing anxiety and improving overall well-being.

Building a Community Network

1. Support Groups: Joining brain tumor support groups offers a connection with others who understand your family’s situation. These groups are a great resource for sharing experiences and coping strategies.
2. Volunteer Services: Accessing volunteer services through hospitals or community centers can provide practical support, allowing families to focus on emotional health.
3. Community Education: Informing friends, extended family, and coworkers about the effects of brain tumors can foster understanding and support from your broader community.

1. Foundation Involvement: Directly support the Pediatric Brain Tumor Foundation by participating in their events or initiatives. Visit Get Involved with Cure the Kids to learn about different ways you can contribute, from fundraising to advocacy, and help make a meaningful difference in the lives of those affected by brain tumors.

Focusing on Positive Moments

It is just as important to focus on positive experiences as it is your own negative emotions. Celebrating small achievements and enjoying moments of happiness can help shift focus from fear to resilience and hope.

Managing a brain tumor involves addressing both physical and emotional health. By creating a supportive environment, utilizing practical anxiety-reduction strategies, and building community connections, families can strengthen their resilience and face the future with hope.

For more detailed information and support, visit the Pediatric Brain Tumor Foundation at curethekids.org, and consider making a donation to support our mission to accelerate progress for kids with brain cancer at team.curethekids.org/campaign/594622/donate.