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As Cancer Survivorship Rises, More Should Be Done to Address Associated Emotional Distress

Cancer may have happened to me, but it doesn’t define me — and it doesn’t have to define you.

By the time I turned 31, I had overcome aggressive breast cancer–but found myself facing the often-overlooked emotional challenges of returning to “normal life.” I felt isolated, depressed, guilty, and angry.

What I’ve come to find are these feelings were not unique to me or my experience. Research shows that at least 35% of people impacted by cancer experience significant emotional distress, and more than 50% don’t seek traditional support.

Statistics on rising cancer survivorship offer exciting promise, with the National Cancer Institute’s research showing survivorship in the U.S. will rise from 15.5 million to 20.3 million by 2026. However, it’s now more broadly understood that surviving cancer changes a person’s psychological mindset.

Generating awareness and securing funds for research and development tend to top the medical community’s agenda when it comes to cancer care. While the development of new treatments is undeniably important, many don’t realize that as a result, a critical aspect of care can get overlooked: emotional care.

Struggle is universal and that reality crystallized for me during a six-week service trip to South Africa, where in one of the underserved Townships on the anniversary of my double mastectomy, I helped a young child in need. It was this moment that jolted me out of the self-pity cancer had triggered and sparked a movement in me to empower others to heal the emotional scars of cancer, reframe adversity, and redefine what’s possible in their lives. I still had so much to give to the world, and I wanted others to feel that way too.

Prior to this trip and still in the thick of my treatment, I had started an online community to share my experience and connect to others with cancer. What I found was that I was not alone in feeling lost and that the typical support group probably wasn’t going to help. I connected to others who wanted to feel empowered and in control of their life again. Who didn’t want their most-recent story to be cancer.

When I returned from South Africa, going back to life as I knew it and returning to the job I had once been passionate about in IT recruiting wasn’t an option. I decided to take a leap and bring to life my once far-fetched dream of transforming the online platform into a nonprofit organization.

20 programs later with a “tribe” of nearly 300 (the name for our alumni community), what we’ve confirmed is that when cancer survivors experience volunteering and are guided through reflective activities, they can step outside the environment in which they were sick and see themselves and the world from a fresh perspective. I’ve seen this drastic change in perspective truly transform the lives of so many of our tribe.

Facilitating these experiences, we empower them to step beyond the label of cancer patient or caregiver and think of possibilities beyond the disease, carrying on the “ripple impact” of service into their communities.

Ten years after my diagnosis, we have expanded our programming to provide support and leadership skills to empower cancer advocates in Kenya, with plans to do the same in other countries. We’ve also launched an online program where a broader community of people impacted by cancer can gain tools and resources to heal emotionally and start living with or beyond the disease.

Cancer may have happened to me, but it doesn’t define me—and it doesn’t have to define you. If you have experienced cancer, know that change is possible even in times of challenge. It’s important to give yourself permission to grieve what you’ve lost and to be patient with yourself as you navigate your way forward. There is no one size fits all approach to healing. But, if you can connect to a sense of community and activities that bring you meaning and joy, you can begin to open yourself up to new possibilities.

Terri Wingham is the founder and CEO of A Fresh Chapter, a nonprofit that helps people impacted by cancer move beyond the isolation and trauma of cancer and empowers them to build resilience, navigate uncertainty, and reclaim their stories. AFC’s goal is to activate one million people impacted by cancer globally to become advocates for change by 2025. Today, she spends most of her life living out of a suitcase while running programs around the world.

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