I am here with all of you today to give you the “survivor's perspective.” As such, I will not be wearing one of the many hats I get to wear in my day-to-day work on behalf of the National Coalition for Cancer Survivorship (NCCS), but will give you some snapshots of the survivorship experience—something I have come to believe is the “art of cancer survivorship,” to distinguish it from what most of you are here to do, and that is to listen, to learn, and to explore, the “science of cancer survivorship.”
The credential of “cancer survivor” is not always applicable to the science. What we cancer survivors experience—our qualitative, anecdotal, day-to-day living with and dying from this disease—does not always map neatly to the science of cancer survivorship. But these stories of survivorship (many of them written in books; beautifully illustrated in art and photography as portraits of rebirth, joy, and sorrow; and some borne in public witness testimony before Congress or the President's Cancer Panel) weave a tapestry of survivorship that is so much more art than science.
The real challenge I believe is working with this exquisite “art of survivorship” and finding the most elegant way to marry it to the “science of survivorship. ” And the job of NCCS and of our friends at the Lance Armstrong Foundation, who from their founding in 1997 have embraced NCCS's definition of survivor and survivorship, is to make sure that this wonderful Office of Cancer Survivorship that NCCS worked so hard to establish in 1996 is funded much better to fuel the excellent research that you in this room are so dedicated to carrying forward. My colleagues Maria Hewitt and Roger Herdman, who are here from the Institute of Medicine's National Cancer Policy Board, along with my colleague and friend Susan Weiner, are working hard on studying the science of survivorship in adults and children so that we will have the ammunition we need to go to Congress with an accountable and well documented justification for this request.
I am here with you today as someone who is privileged to be actively engaged in what we at the NCCS call “survivorship“—what one of NCCS's founding members, Susan Leigh, in an article written in 1992 for Oncology Nursing Forum entitled “ Myths, Monsters, and Magic: Personal Perspectives and Professional Challenges of Survival” described as a continually ongoing process rather than a stage or component of survival, and as “the experience of living with, through, or beyond cancer.”1
Shortly after I became the Director of NCCS in 1992, a colleague sent me an article by Dr. Stanley Reiser that was published in JAMA and titled, Consumer Competence and the Reform of American Health Care, in which he wrote about using the experience of illness in shaping the mission of healthcare.2 He referenced an article in the New York Times quoting Vaclev Havel's views of the politics of the world. He cited Havel's critique and its similarities to science and medicine's continual evolution and development. Havel wrote:
Things must once more be given a chance to present themselves as they are, to be perceived in their individuality. We must see the pluralism of the world and not bind it by seeking common denominators or reducing everything to a single common equation. We must try harder to understand than to explain. The way forward is not in the mere construction of universal systemic solutions, to be applied to reality from the outside; it is also in seeking to get to the heart of reality through personal experience.
I had all but tucked that beautiful observation away as one of my favorites, when nearly 10 years later, as I heard our new National Cancer Institute Director, Dr. Andy von Eschenbach, address the National Cancer Advisory Board for the first time, he spoke to the Board of what he termed his “life lessons” that he brings to his new role. One of those lessons, he told us, is that “You can't solve a problem you fundamentally don't understand. ”
What Andy did for me that day was to see that I could reduce Havel's analysis to 10 profound words: You can't solve a problem you fundamentally don't understand.
It was with great foresight in 1986 that the 26 founding members of NCCS had the collective wisdom to come up with 2 words to describe people diagnosed with cancer, their caregivers, friends, and families, and to put a word to the experiences they go through following a diagnosis of cancer. These two powerful words have been the subject of much debate, a debate we have willingly embraced. These two words are “survivor” and “survivorship.”
The NCCS's definition of a survivor is not confined by the curves in a 5-year survival graph. The founders of NCCS defined a survivor as anyone with a diagnosis of cancer from the moment of diagnosis and for the remainder of life, whether that life was lived in increments of weeks, months, years, or decades. This definition was more empowering than the terms then commonly used by the scientific community (cancer patient or cancer victim) and was deliberately put out there to discourage erecting unnecessary boundaries in the lives of people who are living with and dying from cancer.
The founders of NCCS also extended the definition of survivor to include all of you in this room today, because you comprise the community of survivors who support the person diagnosed with cancer as either a caregiver, researcher, family member, or friend.
And let's examine the word “survivorship” for a moment.
In fact, prior to the founding of NCCS, survivorship did not exist as anything but a term of art and a term of law and had no relation to matters bearing on science or health. There are people in this room today who have embraced and employed these definitions for 15 years, and they must be acknowledged. Led by two of the founding members of NCCS, Patti Ganz and Susie Leigh, I look around this room today and see the beautiful faces of so many leaders in the survivorship movement, many of whom have been involved with the NCCS for over a decade. You know who you are, and most of your names are in this document, a document authored by five leaders of NCCS in 1995, and the document that Dr. Richard Klausner credited with his decision to establish the Office of Cancer Survivorship in 1996.
Over these last 2 intensely jam-packed days, you have heard about the physical, psychological, social, and spiritual consequences of survivorship. When I thought about preparing remarks for today, I realized I could have filled up all this time simply recounting vignettes and telling the stories of my fellow survivors. But there is someone's account of her personal cancer experience that I feel leaves you with the sentiments that are woven throughout the countless stories we hear.
After my very last radiation treatment for cancer, I lay on a cold steel table, hairless, half-dressed, and astonished by the tears streaming down my face. I thought I would feel happy about finally reaching the end of treatment, but instead, I was sobbing. At the time, I wasn't sure what emotions I was feeling. Looking back, I think I cried because this body had so bravely made it through 18 months of surgery, chemotherapy, and radiation. Ironically, I also cried because I would not be coming back to that familiar table where I had been comforted and encouraged. Instead of joyous, I felt lonely, abandoned, and terrified. This was the rocky beginning of cancer survivorship for me.
I'm DONE, according to the medical profession. But I don't really FEEL done. I think we survivors are never truly done. We just move from the quantifiable, treatable disease to the immeasurable uncertainty of survivorship. Being in the midst of active treatment means being seen regularly by a nurse or a physician—being truly CARED for. As I got up off that radiation table for the last time and walked away, I found myself alone with a cancer ghost who would not let me forget where I had been or allow me to freely choose where I might be going.
We cancer survivors are millions strong, and our ranks will continue to grow as improved cancer treatments extend our lives. But because this struggle with uncertainty after treatment is completed is usually a silent battle waged outside of the physician's office, most physicians don't think or talk about it. In my life as a primary care physician before cancer, I certainly did not. Now I believe that we physicians need to talk with our cancer survivors about the unique struggles of survivorship. Oncologists need to focus on preparing us cancer patients for survivorship. That is, they must address the loss experienced by survivors when active treatment is over and they are sent away from a very intense environment. They must help survivors understand the impact of fear and uncertainty on their lives and what might help to reduce these stresses.
Elizabeth McKinley, M.D.
Case Western Reserve University
[Reprinted with permission from Ann Intern Med. 2000;133:479–480.]
So, my closing thoughts to you are, as you leave this room today to go back to the very, very important work of writing grants, reviewing grants, and helping people in your communities day to day deal with their personal journeys of survivorship, please know that the cancer advocacy community, represented by scores of organizations that were founded by and for cancer survivors, stands ready and eager to tell you our stories of survivorship with the belief that while grateful for the blessings of survivorship, for the increasing length of days, months, and years added because of new and improved therapies for cancer, that this diagnosis is filled with many punishing and adverse consequences as well as joy for living each day.
The physician Victor Sidel once said that statistics are people with their tears wiped away. That is the way NCCS views cancer survivors, and on behalf of all of us at NCCS, thank you for your attention and for all you do for cancer survivorship.