Susie Leigh – Founding a Movement, Shaping the Future

Advocate Spotlight: Susan (Susie) Leigh, BSN, RN

A Vietnam veteran, an oncology nurse, a four-time cancer survivor, and one of the founding members of the National Coalition for Cancer Survivorship (NCCS), Susie Leigh is not just a cancer survivor; she is a pioneer in the cancer survivorship movement. Susie’s work has helped to shape the survivorship movement and continues to influence cancer care today.

Diagnosed with Hodgkin’s Lymphoma in 1972 at the age of 24, Susie experienced firsthand the effects of aggressive treatments that, while saving her life, would lead to ongoing health issues. But cancer therapies were so new at that time that there was no history or guides to prepare her for life beyond treatment. Subsequently, she was shocked two decades later when diagnosed with breast cancer, likely a result of having received radiation to the chest as part of her treatment for Hodgkin’s. But the late effects were just beginning. She was eventually diagnosed and treated for early-stage bladder and lung cancers, also attributed to her original treatments. And more recently, life has been complicated by numerous radiation-induced cardiac issues. Thus, another issue for much needed advocacy has been identified: raising awareness within the health care community about the need for continued and systematic long-term follow-up for cancer survivors, especially those at risk for future complications.

Susie’s unique perspective on survivorship and deep understanding of the long-term and late effects many survivors face is the foundation of her advocacy. “It’s not enough to survive cancer,” she explains. “We also need to address the quality of life after treatment, including possible risk factors for future problems.” And, for decades, Susie has worked tirelessly to ensure that the voice of the survivor is heard at every level of the health care system.

In 1986, Susie joined a small group of like-minded individuals to establish NCCS, essentially launching the cancer survivorship movement, with the goal of improving the care and quality of life for cancer survivors. NCCS was the first organization to identify and advocate for cancer survivors’ needs long after treatment ended, and Susie has been a driving force behind that mission ever since. As she recalls, the formation of NCCS was a response to a glaring need: “Back then, cancer survivorship wasn’t even a term, much less a movement. There was no blueprint for how to support people after cancer treatment.”  So NCCS became a strong voice for having cancer survivors embedded in conversations, committees, and organizations that dealt with cancer research, treatments, and resources both locally and nationally. Examples of how Susie contributed to this mission early on are:

• Early NCCS:
  • Secretary, Board of Directors (1987-1990)
  • President, Board of Directors (1992-1994)
  • Congress Planning Committee. (1994)
  • Chair, Nominating Committee (1997)
  • Cancer Survival Toolbox Team (1998-2008)

• Oncology Nursing Society:
  • Started the first Survivorship Special Interest Group at annual Congress.
  • Spoke to numerous local oncology nurses around the country.
• National Cancer Institute:
  • Sat on review committees & participated in site visits at cancer centers
  • Selected as consumer advocate on Board of Scientific Counselors
  • Member of Patient Advocate Steering Committee
  • Member of Clinical Trials Advisory Committee

Besides these and other organizational work (ASCO, ACS, US Oncology), Susie had published articles and book chapters in both professional and lay cancer journals and newsletters. And in addition to her local and national speaking engagements, she was also invited to introduce survivorship to international audiences in seven different countries. “I felt like I was planting seeds of survivorship, yet never really knew the overall impact I had. It has taken a long time to see our mission flourishing within the expanded cancer community.”

Since those early days, Susie has remained active with NCCS, contributing to its growth and evolution. Today, her voice is as important as ever, as she continues to serve as a guiding force for our future. “What I’m most proud of,” she shares, “is that NCCS and its advocates continue to raise awareness about survivorship issues and continue to meet the diverse and evolving needs of survivors. We’ve honed in on what we do best—advocating with and for survivors at every level of the health care system and wherever they are along the cancer continuum.”

“I’m proud of what we’ve created at NCCS,” Susie says. “But there’s still so much more to do. Looking ahead, her vision for the future of NCCS is one that continues to amplify the voices of survivors. She is particularly excited about the Elevating Survivorship program, which focuses on empowering survivors and advocates to drive change in their own communities. “The strength of the survivorship movement lies in the diversity of individual and community experiences, and the ability of survivors to advocate for themselves and others,” she says.

Beyond her vision for NCCS, Susie is passionate about the broader cancer survivorship movement. She believes that survivorship care must be integrated into every facet of health care and that more attention must be given to the lingering and late effects of treatment. “We’ve made progress, but there’s still a gap in understanding the full scope of what survivors go through, especially years down the line,” she explains. For Susie, the work of survivorship is not just about treatments but about ensuring that survivors can live as long and well as possible after cancer.

Susie Leigh’s contributions to the cancer survivorship movement are immeasurable. As one of the original founders of NCCS, her advocacy has touched the lives of countless survivors and caregivers. Even today, she remains deeply engaged with NCCS, offering her expertise and wisdom to the next generation of advocates.

After decades of advocacy, Susie continues to push for a future where every cancer survivor receives the care, support, and recognition they deserve. Her legacy is one of resilience, determination, and hope — for survivors today and for generations to come. For Susie, the fight for better survivorship care is personal — and it’s far from over. “Every survivor has a story,” she says, “and every story matters. We need to keep fighting for those voices to be heard, and for the care they deserve.”

More About Susie

Author Judith L. Pearson interviewed Susie extensively for her book about the cancer survivorship movement, From Shadows to Life. Read more and watch a conversation about the book here.