The demands of modern medicine leave little room for history lessons. Nevertheless, I will try to persuade you to read From Shadows to Life-A Biography of the Cancer Survivorship Movement. The historical perspective may energize your efforts to optimize your patients' care.
Journalist Judith Pearson felt compelled to tackle this topic in 2017, six years after feeling blindsided by her own post-cancer challenges. Coming across work by the National Coalition for Cancer Survivorship (NCCS), she reacted to the notion of survivorship with shock: "OMG! How could I have not known about this?" For the next year, she scoured newsletters, memos, articles, and diary entries about the organization that had introduced the label "survivor" in 1986. Failing to find a comprehensive history of either the NCCS or the movement it advanced, she did what she does best: She used her investigative and storytelling talents to fill a gap.
From Shadows to Life offers readers a bird's eye view of the history of "survivorship," by which I mean the science and art of making life the best it can be after a cancer diagnosis. Her overarching goal is increasing awareness among cancer survivors and facilitating dialogue among all the stakeholders in cancer care, especially between patients and caregivers. Pearson reasons that awareness of "how the survivorship movement has changed our collective lives" may encourage patients to advocate for themselves and, if they choose, join advocacy efforts that help others. For clinicians, reflecting on how cancer care got to today may feed your hope of facilitating a better tomorrow for your patients and for public health.
The 275 pages are divided into 16 chapters, organized chronologically from 1965 to 2021. As with any social movement, the story is complex. The pace of progress in survivorship has been impacted by the relentless work of individuals and the interplay of a variety of forces-scientific, political, social, economic, and cultural. Of necessity, Pearson backtracks each time she picks up a new theme to braid it into an understandable history. For example, in the chapters about the 1970s, she backtracks to the 1950s and 1960s to explain the impact of the Viet Nam War and the space race with Russia on advocates' efforts to generate public demand for increased government funding for cancer research. To keep readers oriented in time, epigraphs introduce chapters with a specific year and statistic (usually the corresponding number of Americans newly diagnosed with and/or surviving cancer).
No history book includes every detail, let alone tells all the narratives perfectly. Success is measured by a book's ability to engage readers, fill in blanks in their knowledge, and help them know in useful new ways what they already knew. To those ends, Pearson succeeds by weaving together multiple concurrent storylines, zooming in for the personal stories and zooming out for the milestones that drove the history of cancer survivorship.
Her timeline includes a huge cast of characters and organizations impacting the ebb and flow of the survivorship movement. The strength of the book is Pearson's unique blend of fact and story. Footnotes in other histories of medicine are described as if by a fly on the wall, making readers vicarious witnesses to the traumas, courage, and persistence at the heart of the movement. A young man received meals on paper plates because his mother feared catching his cancer. Oncology nurses were "charged with mixing the new, highly toxic chemicals...while relatively unprotected."
Even for clinicians working in survivorship who are history buffs, some stories surely will be new. Pearson's description of the NCCS founders' inaugural meeting deepened my appreciation for a gathering in Albuquerque I had heard about repeatedly over the years. Fascinating new details reshaped my vivid memories of NCCS events I had participated in and enriched what I knew about key players who are longtime personal friends or mentors.
Most chapters include material on the life and work of Susie Leigh, one of America's first oncology nurses and a nearly 50-year survivor. Shining a spotlight on Susie throughout the book helps keep "the patient" center stage, reminding readers how far survivorship has come and how many challenges persist. The power and limits of advocacy remain apparent while reading of Susie's professional triumphs, ongoing medical problems, heartbreaking disappointments, and enduring hope of advancing survivorship.
While some details are crucial to understanding the history, others simply make for enjoyable reading. Patient care will not be affected by learning when and why a hyphen was added to "psycho-oncology." Still, it is fun to imagine luminaries Jimmie Holland and Julia Rowland realizing that the word looked "bizarre" after receiving the first printed copies of the groundbreaking 1989 Handbook of Psychooncology.
My only criticism is that in later chapters Pearson uses the term "survivorship" a few times to mean "post-treatment consequences." While a commonly used definition, that usage in this book strikes a nerve. Why? After reading about the movement's struggles, I see today's multiple definitions of "survivorship" as more than an inconvenience or annoyance. Such ambiguous language is an obstacle to progress in cancer care. Pearson's history ignited in me a sense of urgency to bring clarity to "survivorship" (OT; 05/05/2021). With heightened appreciation for the sacrifices and tireless efforts of the advocates who came before me, I feel a sense of obligation to promote universal adoption of a single definition for "survivor" and another for "survivorship," both capturing the ideal of "whole-person care across the continuum."
If nothing else, Pearson's big-picture perspective makes a convincing case that...
* Survivors are an essential source of information and insight about cancer care.
* Transparency and collaboration speed progress in survivorship.
* The cornerstone of survivorship is hope.
Since its inception, the survivorship movement has been a mission of hope. May "the unforgettable voice of these survivorship pioneers" inspire you with a sense of your place in history and your ability to carry on their work, advancing the movement while helping each of your patients live his or her best life.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.