Remembering Susie Leigh: A Founder, a Force, and a Friend
Susan (Susie) Leigh, BSN, RN-Retired — one of the founding members of Cancer Nation, a five-time cancer survivor, and one of the most influential voices in the history of the cancer survivorship movement has passed away. We are heartbroken, and we are deeply grateful.
Susie did not simply witness the birth of the cancer survivorship movement. She helped build it. In 1986, she joined a small group of determined survivors and allies in Albuquerque, New Mexico, to create the National Coalition for Cancer Survivorship (now Cancer Nation). Early on, they successfully fought to change the cancer vocabulary from “victim” to “survivor,” and coordinated a network of local and regional groups to distribute resources and build community at a time when cancer was a taboo subject. Susie served as Secretary and later President of the Board of Directors, shaped the Cancer Survival Toolbox®, and spent decades making sure that survivors were not just spoken about, but heard.
Susie Leigh during her time as NCCS President.
Diagnosed with Hodgkin lymphoma in 1972 at age 24, shortly after returning home from serving as an Army nurse in Vietnam, Susie Leigh found her calling. Her diagnosis drew her toward oncology nursing, and into a career devoted to caring for people living with and beyond cancer. She would go on to survive breast, bladder, and lung cancers as well, each a late effect of her original treatment.
Susie understood cancer from both sides of the bedside. As a survivor, she knew firsthand what happened after treatment ended, and how little attention the system paid to the quality of the life that followed. That experience was the foundation of her advocacy. As she said, “It’s not enough to survive cancer. We also need to address the quality of life after treatment, including possible risk factors for future problems.”
For Susie, that conviction shaped everything. She served on national committees at the National Cancer Institute, the Oncology Nursing Society, and other leading institutions. She introduced survivorship to international audiences in seven countries. She sat on steering committees, mentored advocates, and gave her time to the people who came after her. She served as a member of the Cancer Nation Advocates Steering Committee and a mentor for the Cancer Nation Leadership Academy. She also served as a board member of Hodgkins International.
Susie (center) with seven other co-founding members at the 1996 NCCS National Assembly.
Susie Leigh (center) receives the Stovall Award from Board Members Dr. Ana María Lopez and Dr. Julia Rowland.
Most recently, Susie was honored at Cancer Nation’s Igniting Hope Awards Reception on June 26, 2025, in Washington, DC, where she received the Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care, a national award recognizing individuals who have made a lasting impact on patient-centered cancer care.
Ellen and Susie were dear friends, so it was fitting for Susie to receive the award. Many of Susie’s friends from her long career in advocacy came to celebrate her. She said afterward that it was a highlight of her life to receive the award and spend time with so many friends.
Friends and colleagues of Susie discuss how she has pushed the nation to see cancer survivors as whole people for more than 40 years.
Watch Board Members Ana Maria Lopez, MD and Julia Rowland, PhD present the Stovall Award to Susie.
She served on the Cancer Nation Advocates steering committee and was our guiding light, reminding us of our purpose: supporting the quality of life of cancer survivors. Her grace and generosity were at the forefront of every interaction, and to be supported and cared for by her was truly a gift.Veronika Panagiotou, Director of Advocacy and Programs, Cancer Nation
Susie at NCCS’s THE MARCH in Washington, DC, 1998.
We encourage you to read more about Susie’s extraordinary life and legacy:
- Susie Leigh — Founding a Movement, Shaping the Future — A blog post about her lifetime of accomplishments.
- Bestselling author Judith L. Pearson interviewed Susie extensively for her book about the cancer survivorship movement, From Shadows to Life. Read more about the book and watch a conversation with Susie.
- 2025 Ellen L. Stovall Award Announcement
- Igniting Hope Awards Reception
- Susie was featured in USA Today in 2019: “Life after cancer: More survivors live longer, face new health challenges.”
Susie believed that every survivor has a story, and that every story matters. She spent more than five decades making sure those stories were heard at every level of the health care system in nursing journals, on national committees, at congressional hearings, and in the hearts of the advocates she mentored.
We carry her forward in our hearts and our work every day to demand a cure for care.
