After a brain tumor diagnosis, be smart about your next move
Every year, 24,000 primary brain tumors are diagnosed in the United States. While the diagnosis is often paralyzing, having a proactive plan for what to do next is crucial for ensuring the best outcome.
“Hearing the words ‘you have a brain tumor’ automatically sends people into panic mode,” said Dr. Brian Beyerl, an ANS neurosurgeon at Altair Health. “Learning that your headaches, nausea, seizures or mood swings are actually being caused by a brain tumor is never easy to digest. In many cases, patients don’t know what to think, let alone what they should do to advocate for their health. However, having a sound action plan can mean the difference between life and death.”
There are many types of brain tumors — from benign cystic lesions to glioblastoma multiformes, the most common and deadliest of malignant primary brain tumors in adults. While each case must be evaluated on an individual basis, patients and their loved ones must educate themselves about certain fundamentals so they can be proactive in their own treatment and care.
Dr. Beyerl offers the following tips to patients who have been diagnosed with a brain tumor:
1. Ensure you have received the appropriate diagnostic testing.
There are two primary types of diagnostic tests that neurosurgeons use to examine the brain: CT scans and MRIs. CT scans, also known as CAT scans, are best for preliminary screening. They are better tolerated by patients, quicker to perform and less costly. They also are not as sensitive or as accurate as MRIs in showing anatomic detail or visualizing the tumor. Because of this, using CT scans in isolation, especially when performed without contrast, can result in severe misdiagnoses. Insist on getting an MRI to ensure the doctor has the most accurate information about what is going on in your brain before proceeding to treat it.
2. Explore your treatment options.
Viable treatment options vary based on the nature and location of the tumor. For example, with a meningioma, which is a mass that slowly grows from the covering of the brain and spinal cord, a combination of removal and radiation may be used depending on the accessibility of the tumor. There often are alternative courses of treatment available, so ask a doctor about — and do research on — all the options, including minimally invasive surgeries and non-invasive techniques such as CyberKnife. These innovations reduce trauma to the brain and require less cutting, resulting in shorter hospital stays, faster recoveries and better outcomes than traditional surgery.
3. Realistically consider the risks.
Have a frank conversation with a doctor about the potential implications of each treatment. While no one enjoys thinking about less-than-perfect scenarios, risks, such as infection and other complications, exist with any kind of treatment. Will the brain function at 100 percent again? Will the patient feel like the same? What are the short- and long-term side effects? What type of follow-up care is needed? Knowing what to expect will help prepare for recovery.
4. Find a doctor who will be your partner along the journey.
There’s no substitute for a doctor’s credentials and experience, but the softer skills — bedside manner, empathy and communication — also are supremely important. A patient should look for a neurosurgeon he or she feels comfortable with and who is committed to his or her care long term. He or she should view you not only as a patient, but as a partner in your health.
“Having a brain tumor is one of the most significant and emotional experiences of a person’s life,” Dr. Beyerl said. “Working with an experienced neurosurgeon who provides guidance and empowerment along the journey can make all the difference in the world.”