How to be Your Own Advocate
In 1998 at age 24, I worked for a Congressman in the U.S. House of Representatives, and I had plans for law school. But, the unexpected happened when I was diagnosed with a brain tumor.
I remember hearing the diagnosis and breaking down. My body went numb. Since then, I’ve had three awake brain surgeries in 1998, 2011, and 2013. I also had radiation and chemotherapy, as well as immunotherapy in a clinical trial with a dendritic cell-based vaccine.
Over the last 18 years, I’ve learned a tremendous amount about why cancer patients benefit from becoming their own advocates.
What does being your own advocate mean? It’s about staying informed and focusing on optimal health and healing to improve quality of life and survival. As my own advocate, I learned that knowledge is power but educational information must come from reliable sources.
When I was diagnosed in 1998, the internet was still new and with little information. Thankfully, a few friends connected me with well-known hospitals and oncologists focused on brain tumors. I also called major brain tumor non-profits who shared information about the disease.
After talking with several oncologists, it was clear I needed awake brain surgery since the tumor was located in my left temporal lobe where speech, memory, and sound are affected. I participated in a clinical trial with awake brain surgery at the U.S. National Institutes of Health (NIH). Beyond the standard of care, new advances in cancer are tested and sometimes approved in clinical trials.
Depending upon where you are in your journey, along with treatment recommendations, it’s important to ask your oncologist about any clinical trials that might match your condition. You can also do some research through the NIH ClinicalTrials.gov. Another resource is EmergingMed.com, providing helpful assistance in finding clinical trials.
Since then, I’ve further educated myself through research.
- National Cancer Institute (NCI) provides extensive information. For most types of cancer, NCI uses a format as either ‘Patient Version’ sharing some details or ‘Health Professional Version’ with more specifics. With NCI and other cancer websites, keep in mind that information cannot be updated all the time, so it’s smart to research elsewhere. When researching hospitals for treatment and care, Cancer.gov also lists NCI-Designated Cancer Centers that offer cutting-edge cancer treatments in communities across the United States.
- Cancer.net has helped me explore oncologist approved information about diagnosis, during treatment, survivorship, and other topics.
- American Society of Clinical Oncology (ASCO) offers a tremendous amount of information too—including some abstracts and cancer research results in journal articles.
As an advocate, cancer conferences have been helpful for education. I attended brain tumor non-profit conferences after my surgery, meeting many brain tumor patients made me feel that I wasn’t alone.
I also search PubMed.gov, which is another government site put together through the NIH with more than 26 million citations. When I discover new study findings, I feel empowered. But, research has complexities, so asking for help in study results and understanding them is quite important.
Advocacy also includes addressing the whole person, not just the disease. Integrative cancer care treats and supports the body, mind, and spirit, including social and environmental health. Research shows that integrative cancer care improves quality of life, survival, and cancer prevention.
All of my research—and my experiences as a patient emphasized the dire need to explore outside the box. I would not be here without finding quality cancer care and treatments. Depending upon your condition, and depending upon your situation, various possibilities may be available for you.
Without a doubt, my own advocacy has given me the opportunity to live. This healing focus is powerful—and for each person—more is possible by being your own advocate.
Jeannine Walston, an 18-year brain tumor thriver, is passionate about sharing her extensive knowledge and insights learned from her personal health and healing journey. Jeannine is a skilled cancer coach with deep professional experience in the cancer field. She is an expert on various topics covering conventional cancer, and specific proficiency on integrative approaches to support the "whole person." Her passionate flare and force shines to educate and advocate! Jeannine lives in Los Angeles, California and works nationally and internationally.