Navigating Glioblastoma: Advocating for Yourself or a Loved One

Navigating Glioblastoma: Advocating for Yourself or a Loved One

Glioblastoma multiforme (GBM) is a fast-growing type of brain tumor. It is most commonly found in adults.

Doctors focus on the medical and scientific course of action, but patients’ beliefs and values are important too. Communicating clearly and fairly can help avoid conflict and make the process smoother.

Please get to know the healthcare team and learn about their roles. Ask for clear, accurate information about the tumor and its treatment.


Ask Questions

Glioblastoma (GBM) is an aggressive and difficult-to-treat brain tumor. It is one of the most common primary brain tumors. GBMs grow from star-shaped cells called astrocytes. They rarely spread to other parts of the brain or body.

An MRI or CT scan often finds the tumor. It can also be diagnosed by examining surgically removed brain tissue. People who have a higher risk of getting a glioblastoma include those with:

Ask your doctor about treatment options and what your prognosis (outlook) is. Please write down your questions and bring them with you to appointments. Ask about clinical trials, which are studies of new treatments. You can participate in a study testing a new drug or radiation treatment. These drugs aren’t a cure for glioblastoma but they can ease symptoms and help you feel better. They may help you live longer. Your doctor can find out if you’re eligible for a clinical trial.

Be Organized

Glioblastoma is a lethal brain tumor that currently has few treatment options. It is one of the most common causes of death among cancer patients. It has a median survival of 14 months and recurs in most cases. The tumor often affects a person’s ability to speak and think clearly. The person may also become irritable and aggressive.

Discuss with your loved one their priorities, goals and care preferences. Encourage them to make an advance directive stating who they want to speak for if they become incapable of making decisions and what types of care they do and do not want. Give a copy of this document to their healthcare team.

Advocacy groups like the Glioblastoma Foundation professionals can help facilitate shared decision-making (SDM) for people with glioblastoma by providing educational materials, answers to frequently asked questions and support throughout the journey.1-5 SDM is a process of effective communication between the patient, their family and their healthcare providers that leads to better outcomes.

Communicate Your Needs

While a diagnosis of Glioblastoma (GBM) is stressful, it’s important to communicate your concerns with doctors and nurses. Talk about how the disease and treatment affect you, your family, and your daily life. It’s also important to let your team know if you are experiencing side effects such as changes in mood, nausea or vomiting, or hearing or vision problems. These symptoms can indicate GBM or complications from the surgery and other treatments.

You will see many specialists during your diagnosis and treatment for GBM, so make sure you ask questions. If you are struggling with your emotions or coping, talk to your doctor about therapy options such as counseling and mental health services. Support groups, including Glioblastoma Foundation and social workers, are also helpful.

Ask for Help

Glioblastoma multiforme (GBM) represents about 15 percent of brain tumors in the United States. High cancer grows quickly and often invades surrounding healthy brain tissue. GBMs are resistant to treatment and have poor survival rates. A glioblastoma diagnosis can be devastating, and many people struggle emotionally and psychologically. A supportive family and close friends can help, as can spiritual advisors or healthcare professionals trained in assisting patients to cope with stress and loss. Medicines to control pain, depression or anxiety also can be helpful.

Despite the difficulty of dealing with a brain tumor, there is hope. Treatments focus on removing or shrinking the tumor to reduce symptoms and improve quality of life. They may include surgery to remove the tumor, chemotherapy and radiation therapy, which uses S-rays to damage cancer cells so they can’t grow.