How to Become a Cancer Survivor and Transforming Patients into People

When I was diagnosed with a brain tumor in 1998, I found myself entering the unknown. I witnessed that being a patient with cancer requires significant attention and care. Over time, I discovered that how we define our experience — and using a proactive mindset — are meaningful factors in the journey.

Awareness of being a patient with cancer is crucial for finding the best possible answers. Yet identifying ourselves solely as patients with cancer only captures a part of our identity.

I learned that the National Coalition of Cancer Survivorship (NCCS) introduced the phrase "cancer survivorship" to describe the continuum of living with, through and beyond a cancer diagnosis. NCCS declared that cancer survivorship begins at the time of diagnosis and continues through the balance of life. This definition was embraced by the National Cancer Institute’s Office of Cancer Survivorship and widely adopted by organizations such as the Institute of Medicine, the Centers for Disease Control and Prevention, the American Society for Clinical Oncology, the American Cancer Society and the Cancer Support Community.

A patient with cancer is often defined by the presence of an uncontrollable, active and malignant disease, with its aggressiveness varying from person to person. However, adopting the mindset of a cancer survivor opens new possibilities and perspectives. A cancer survivor defines more to feel better and live longer. This proactive approach involves seeking out the best hospitals and oncologists, embracing whole-person care, doing whatever is possible to thrive, striving to make each day count and exploring a variety of strategies.

I also discovered that we are not just patients — we are people first. Factors such as age, culture, location, some healthcare providers, family, friends and other influences can sometimes cause individuals to feel stuck in the identity of a cancer patient, lacking personal power. For some, embracing our full humanity means looking beyond the diagnosis to find more love, gratitude, hope, new meaning and purpose and countless other sources of strength.

I was diagnosed when I was 24 years old. I remember stories with my doctors, including after my first awake brain surgery at NIH. One of my neurosurgeons, Dr. Robert Rosenbaum, looked me in my eyes. He said, “Now, I want you to start following the research about brain tumors. Your doctors have knowledge. You also need to become informed and be on top of it. You need to become your own advocate.”

At first, I had no idea what being an advocate truly meant. I began to explore this role by focusing on self-advocacy, supporting other patients with cancer and caregivers and standing up for important causes. In my own journey, advocacy has meant striving to find the best oncologists, treatments and clinical trials; seeking integrative cancer care for the whole person; building a plan, a team and self-care strategies; continually assessing and reassessing; and drawing on resilience, intuition and other ways.

We are human beings — unique, resilient, and worthy. Strive to make the best choices for yourself. Remember, you are remarkable, even during moments when you feel broken inside. Seek out your own path toward optimal health and healing. Please know that I am offering you my deepest care and support on your journey.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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