Living With a Brain Tumor
Last Updated: March 27, 2023
Receiving news that you have a brain tumor is upsetting, and it's normal to feel uncertain about what to do next. Living with a brain tumor can be challenging, and your experience will depend on the type of tumor, its location, size, and grade (whether it is fast or slow growing), plus your health, age, and response to treatment.
Despite these concerns, many people with brain tumors maintain a good quality of life with the help of supportive care and treatments tailored to their individual needs. Working closely with a healthcare team experienced in treating brain tumors and having emotional and psychological support from loved ones, counselors, or support groups are essential to living with a brain tumor.
Understanding Your Diagnosis
Step 1 is understanding your brain tumor diagnosis because this will help you communicate more effectively with your healthcare team. You will be able to ask informed questions and better understand the answers and recommendations provided by your doctors. Other valuable reasons include:
- Differences in brain tumors: Brain tumors differ based on their location, size, and grade. Also, not all brain tumors are cancerous — approximately 29% of brain tumors are malignant (cancerous), but most (71%) are benign. Some brain tumors, such as meningioma, are slow growing and often have a good prognosis (outcome for patients).
- Treatment options: Understanding your diagnosis helps to determine the most effective treatment plan. Your doctors can explain the treatment options available to you, including surgery, radiation therapy, chemotherapy, and others. Ask about the benefits and risks of each option and consider getting a second opinion.
- Managing symptoms: Depending on your brain tumor type, it may cause a variety of symptoms, such as headaches, seizures, weakness or numbness in the arms or legs, difficulty speaking, vision or hearing problems, and balance issues. Your healthcare team will help manage these symptoms with medications and lifestyle changes and develop a plan to address any concerns that arise.
- Getting the right support: The challenges of a brain tumor diagnosis are best faced with emotional and psychological support from loved ones, counselors, or support groups. A brain tumor can impact your ability to work, manage finances, or make medical decisions, so working with an attorney or financial planner can also provide peace of mind.
- Making lifestyle changes: Living with a brain tumor may require some lifestyle changes, such as adjusting work or school schedules, modifying daily activities, and working with healthcare professionals to manage ongoing symptoms and treatment side effects.
Having a clear understanding of your diagnosis will help you feel more in control and better able to manage both the physical and emotional changes that come when living with a brain tumor.
Benign Versus Malignant Brain Tumors
Living with a malignant versus a benign brain tumor can be different because of the ways they develop and are treated. Here are the main differences to consider:
- Prognosis and long-term outlook: Malignant brain tumors are cancerous and often fast growing, whereas benign tumors are non-cancerous and usually grow more slowly. As a result, the prognosis for malignant brain tumors is generally less favorable than for benign tumors. The psychological burden of knowing that you have less time with your loved ones is tremendous and requires attention (this matter should not be overlooked).
- Treatment: Malignant tumors usually require surgery, radiation therapy, or chemotherapy, or a combination of these, which can cause significant side effects. Benign tumors may be treated with surgery alone or simply monitored over time because they may not pose an immediate threat to your health.
- Symptoms: Both types of brain tumors can cause symptoms such as headaches, seizures, and changes in vision or hearing. However, malignant tumors are more likely to cause personality changes, confusion, and memory loss, which can significantly affect quality of life.
- Recurrence: Malignant tumors are more likely to recur, or come back, after treatment than benign tumors, which can make long-term management and follow-up care an ongoing concern.
- Emotional impact: Living with a malignant brain tumor can be emotionally challenging because the diagnosis can be unsettling and the treatment more difficult. People with malignant brain tumors may also be faced with difficult decisions about their care, which can add to the stress and anxiety they’re feeling.
Brain Tumor Survival Rates
The question of brain tumor survival rate is soon asked after a diagnosis, but the answer is not always easy or straightforward. Survival rates vary widely for brain tumors. The average 5-year survival rate for patients with benign brain tumors is 92% versus 36% for those with malignant brain tumors. This means that at 5 years after diagnosis, 92% of patients with benign brain tumors and 36% of patients with cancerous brain tumors are still alive.
However, survival rates are based on large groups of people and do not predict individual outcomes. Survival rates are also just one piece of information to consider when making treatment decisions and living with a brain tumor diagnosis. Many people with brain tumors maintain a good quality of life with treatment and supportive care.
|Types of Tumors in Adults 20-44||5-Year Survival Rate|
|Low-grade (diffuse) astrocytoma||73%|
|Types of Tumors in Adults 45-54|
|Low-grade (diffuse) astrocytoma||46%|
|Types of Tumors in Adults 55-64|
|Low-grade (diffuse) astrocytoma||26%|
Can I Recover From a Brain Tumor?
Recovery depends on the type of brain tumor, its location, and how advanced it is when diagnosed. In some cases, complete removal of the tumor may be possible with surgery, which can lead to a full recovery. However, even with successful surgery, recovery may take time and can involve ongoing treatment such as radiation or chemotherapy to prevent the tumor from returning.
For other cases, the tumor may not be curable, but treatments may be able to control its growth and manage symptoms, allowing for a good quality of life. However, a full recovery may not be possible in these cases.
Even when a tumor is removed completely, there may be lasting effects on cognitive function (attention, memory, and language processing) or other neurological issues that require ongoing care and treatment. Work with your medical team to develop a personalized treatment plan and discuss the potential for recovery based on your individual situation.
Maintaining a Good Quality of Life
Living with a brain tumor can be challenging, but there are steps you can take to make the best of it and maintain a good quality of life. Here are some things to consider:
- Stay informed: Educate yourself about your brain tumor and the treatment options available. Making informed decisions about your care allows you better control of your situation.
- Focus on self-care: Make sure to get enough rest, eat a healthy diet, and engage in physical activity that is safe for you to help maintain your physical and emotional well-being.
- Stay connected: Staying connected with loved ones and seeking support from others who have been through similar experiences can help you feel less isolated and provide you with a sense of community.
- Set goals: Setting achievable goals that are important to you and focusing on things that you enjoy will help you to stay positive and maintain a sense of purpose.
- Take care of practical matters: Taking care of practical matters such as financial planning, legal matters, and advance care planning helps to alleviate stress and ensure that your wishes are respected.
Working with neurosurgeons and a team of healthcare professionals who specialize in treating brain tumors is also invaluable when living with a brain tumor. These professionals will not only provide medical care but also ensure you have the emotional support to live the best life possible with your diagnosis.
- Living with a brain tumor can be challenging, but each case depends on the type of tumor, its location, size, and grade, plus a person’s health, age, and response to treatment.
- Living with a malignant versus a benign brain tumor can be very different because of differences in their development and treatment.
- Survival rates vary widely for brain tumors and are just one piece of information to consider when making treatment decisions and living with a brain tumor.
- Recovery depends on the type of brain tumor, its location, and how advanced it is when diagnosed.
- The challenges of a living with a brain tumor are best faced when working with an experienced medical team and receiving emotional and psychological support from loved ones, counselors, and support groups.