Emotional and psychological care for patients with brain cancer or a brain tumor can be important parts of the treatment journey.

Published: May 6, 2019 | Updated: May 19, 2021

How do you tell your family you have incurable brain cancer? How do you go on with life while facing an uncertain prognosis?

These are difficult questions that many of us will never need to answer, but for patients facing brain cancer or a brain tumor, these questions are part of the reality of their diagnosis.

Treatment for brain cancer often involves more than therapies to treat the cancer. Emotional and psychological care can also be important parts of the treatment journey.

Rebecca Reichert,  APRN, is a family psychiatric and mental health nurse practitioner with Norton Cancer Institute. She provides support to patients with cancer and their families.

Here, she offers her insight on the issues and therapies that are important to patients with a brain cancer or brain tumor diagnosis.

What questions or concerns do patients have after they receive a brain cancer or brain tumor diagnosis?

Patients with a brain tumor or brain cancer diagnosis often worry about how to tell their loved ones about their diagnosis and how their illness will impact others. They worry also about medical bills, getting back to work and logistical matters like transportation and medication costs.

Of course, patients with brain cancer or cancer that has spread to the brain, worry about death and dying, especially when they have a terminal diagnosis. They may worry about behavior or personality changes such as whether they’ll be moodier or confused. Sometimes patients ask if they could have done something differently to prevent their brain cancer or brain tumor, or whether they missed signs or symptoms of their cancer.

When a patient has a brain cancer or brain tumor diagnosis, what strategies do you suggest for telling their family or loved ones about their diagnosis?

For patients who have children, I suggest that they meet the kids where they are based on their age, developmental milestones and their ability to understand the cancer diagnosis. Children may need additional support through psychotherapy, art therapy or school involvement. It’s important for patients to emphasize that the cancer diagnosis is not the child’s fault, and for parents to use the word “cancer” instead of “sick” so children know the cancer is not contagious, and they can still be affectionate with their parent without getting sick. I encourage parents to keep expectations and schedules intact as much as possible.

The following are additional recommendations for children.

For kids age 6 to 12 years old:

• Keep the conversation short and use props to explain the diagnosis or treatments.
• Be open to a range of reactions to the news that a parent or other family member has cancer.
• It may be helpful to include the children’s teachers in on the news in case there are behavioral changes at school.
• Update children regularly and offer ongoing communication about treatment and progress.
• Give your children jobs to do so they feel useful and less helpless.
• Explain any physical changes and consider discussing the cancer care plan with your child.

For teens age 13 to 16 years old:

• Remind teens that their siblings and friends still need them.
• Encourage them to talk to and seek support from their peer group.
• Find ways to give teens a sense of control.
• Reinforce the love, expectations and support they have available to them despite the changes brought on by the cancer diagnosis.

When patients are coping with late-stage brain cancer or an incurable cancer, how do you help families through that?

With an incurable brain cancer prognosis, we focus on short-term goals, as well as finding meaning in the present, and allowing gratitude for each day. We discuss legacy building opportunities, such as letter writing, recording videos or making a bucket list. We often talk about how to optimize quality of life through non-medication and medication interventions. I work with patients to recognize aspects of their life where they have control, such as sleeping, eating, exercising, taking medication and going to treatments, and how to feel empowered by those decisions. Some brain tumors are terminal while others are manageable, so patients may have to look at their tumor as a chronic disease such as diabetes or hypertension that can be managed for a long time.

What resources are available for patients with brain cancer or a brain tumor and their families?

Norton Cancer Institute’s Behavioral Oncology Program offers patients and immediate adult family members medication management and counseling services. Norton Cancer Institute also offers art therapy, music therapy, social work support and other activities through the Calendar of Hope. Patients can also access resources through Gilda’s Club and other brain tumor groups.

What new therapies are available or being researched for patients with cancer?

From a psychiatric perspective, cognitive behavioral therapy and mindfulness therapy are helpful to coping with a brain tumor. There is current research on meaning-centered therapy, which helps with legacy building and defining goals, especially with a terminal or incurable cancer diagnosis. Biofeedback techniques are on the rise, as are complementary therapies such as acupuncture, massage, aromatherapy and others. There is a lot of hope for future treatments given the amount of ongoing research in this area.