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Five Things to Do If You or a Loved One is Diagnosed with a Brain Tumor

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Dr. Gabriel Zada, USC
Dr. Gabriel Zada, neurosurgeon-scientist at USC

A brain tumor diagnosis comes with instant life changes. You have new and difficult vocabulary to master, complex treatment decisions to make in a relatively short time period — all while making sense of the news.

MindMatters recently spoke with Dr. Gabriel Zada, MD, a leading neurosurgeon-scientist at the University of Southern California. He shared five key tips to help patients and loved ones navigate the time after diagnosis.

1. Don’t try to understand your brain tumor diagnosis alone.

It’s normal to be anxious after receiving your diagnosis, but don’t panic right away. Many brain tumors can be successfully treated or even cured. Diagnosis reports use complex terminology and can sometimes misguide patients, says Dr. Zada.

Some key terms to help understand your brain tumor include:

  • Malignant (cancerous) versus non-malignant (benign)
  • Primary (begins in brain or spinal cord) or metastatic (when cancer spreads from another part of your body to the brain)
  • Grade, a numeric assessment (1-4) of how aggressive your tumor cells are
  • Standard treatment approaches for your specific tumor type (e.g., surgery, chemotherapy, radiation, etc.)

ABTA Handbook for Newly Diagnosed

Dr. Zada says it’s important to ask what these keywords mean for both you and your doctor.

“It can be a little misleading if you just look at the grade of tumors,” he said. “With pituitary tumors, for example, they have different grading systems where some just grade the imaging while others grade the tumor biology using pathology slides.”

Dr. Zada says to seek out information from high-quality resources — not just a broad online search. The ABTA offers a free downloadable Newly Diagnosed Handbook, as well as other educational brochures addressing specific brain tumor types and treatments.

2. Find a health care team you can trust.

According to Dr. Zada, there’s nothing more important than trust between patients and physicians. Doctors play an important role in distilling a wealth of information about your brain tumor and making it easy to understand.

“We really look at that individual, their background, genetics and tumor type and try to offer them a holistic approach using the latest therapy based on evidence from clinical trials — not just prescribe a recipe that every patient gets,” Dr. Zada said. “We never treat patients like statistics.”

While your health care team crafts your treatment plan, Dr. Zada says it’s important to ask yourself if they’re advocating for your needs.

“’Do you have trust in them? Are they responsive to you? Do they make you feel optimistic and that they’re on your side?’”

Dr. Zada encourages patients and caregivers to communicate their wants and needs to their physician and not be afraid to ask questions.

3. Get a second opinion.

Dr. Zada recommends patients get a second opinion (or third, but not more) from a high-volume or academic institution, if possible.

He says the COVID-19 pandemic has prompted many doctors to embrace telemedicine, or virtual doctor visits, which can expand a patient’s options when seeking another opinion.  

“It’s not just finding one doctor — but a cohesive team of physicians with diverse backgrounds and specialties who deal with brain tumors on a routine basis."

One resource to help patients navigate their options is the ABTA Treatment Center Guide. This online search tool provides detailed information about a variety of treatment centers, including the number of patients treated annually, technologies and specialized procedures offered, supportive services available, and more.

4. Explore your support resources.

Once you’re diagnosed with a brain tumor, it changes you and your family. You have to consider treatment and recovery time, insurance coverage and finances, and other day-to-day life changes.

Support groups help both patients and caregivers focus on and maintain their wellbeing.

“You need to put on the oxygen mask yourself before you can take care of someone else,” Dr. Zada said.

A caregiver’s wellbeing is vital as he or she prepares for their changing roles and tries to understand what to expect in the future.

The ABTA has several support services available for both patients and caregivers, including the toll-free CareLine, the Patient & Caregiver Mentor Support program, and online support communities.

5. Do what you can.

There are many sources of information and treatment options to explore – but try not to overwhelm yourself.

In some cases, your doctor might say the best treatment right now is observation and/or follow-up monitoring. That doesn’t necessarily mean something negative. Physicians carefully track your brain tumor’s location and growth to evaluate the best course of treatment and that process is continuous.

“[Some patients] go further to find out what the latest clinical trials are or get referred to a national center for more investigative trials,” Dr. Zada said.

Not everyone is able to participate in groundbreaking studies or relocate for treatment, and Dr. Zada says that’s OK. Rather, he stresses the importance of finding a health care team you can trust and communicate with effectively.

For a list of questions to guide discussions with your doctor, click here.

Picture of Jessie Schlacks

Jessie Schlacks

Jessie is Managing Editor of the bi-monthly e-newsletter MindMatters. Submit story ideas or questions to jschlacks@abta.org.

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