Cancer Survivorship:

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Cancer Survivorship:

A Nursing Perspective

Susan Leigh

W

hen asked to write about cancer survivors from a nursing perspective, I realized how daunting this task could be. Could I be objective in representing my profession and colleagues? Should I share my personal per- spective and why I became an oncology nurse? Would I look at the role of oncology nursing in relation to survivors, or would I focus on other areas of nursing that care for survivors in nononcology settings? From whose perspective would cancer survivor be defined? And where does survivorship fit into the continuum of care? Since there is little agreement as to the definitions of these terms and where responsibilities for survivorship care lie, I must be right upfront with my biases and explain how and why I am interested in this timely topic.

I am both a cancer survivor and an oncology nurse. It was my own personal experience surviving Hodgkin’s disease in 1972 that later propelled me to specialize in the newly devel- oping field of oncology nursing. As my years of survival added up, I became more and more concerned about what would happen to cancer survivors in the long run. For years, I took hormonal therapy for ovarian failure. I continue to take daily synthroid for hypothyroidism. My lungs are fibrotic from radiation therapy and make it difficult for me to breathe in certain situations. My neck and upper chest muscles are atro- phied and cause severe weakness. But all of these conditions are essentially manageable and a seemingly fair trade-off for my extra years of life.

Then I was diagnosed with breast cancer in December of 1990. I abruptly discontinued estrogen replacement therapy and had bilateral mastectomies with reconstruction. It took over two months for my damaged tissue to heal. A few years later my pelvis was fractured in a taxicab accident, leading to pelvic pain and urinary urgency, which continued for months and now years. I received an unexpected diagnosis of carci- noma in situ of the bladder. I then went on to receive 3 years of BCG immunotherapy (1995–1998), and was also started on medication to slow the progression of osteoporosis. Even though I have experienced some late effects of treatment over 3 decades of survival, I still consider myself one of the lucky ones. I have not only done well thus far with the aftereffects of cancer treatment, but I also have access to medical care through the Veteran’s Administration Medical Centers (VA), and I have an insider’s advantage in navigating the healthcare system. Obviously, not all survivors are so fortunate.

So, I have seen and experienced cancer care over multiple decades and from more than one perspective. This experience

of surviving a life-threatening disease has not only impacted my physical health, it has also impacted my views of life and nursing, both personally and professionally. Thus, I share this encapsulated narrative as an example of a never-ending story.

We simply don’t know what will happen next, and what our future will look like. Survival becomes a series of occur- rences—remission, rehabilitation, rediagnosis, and more treatment—and seems more cyclic than linear. We ask ques- tions, such as, how will we know if the cancer comes back, or how do we learn to monitor our health? How do we live with the fear and uncertainty? Who will oversee our follow- up care? When will guidelines be developed so that nonon- cology practitioners will know what to look for when our care is returned to them? And who will pay for this type of con- tinued follow-up? While the questions are many, the answers, unfortunately, are few.

Obviously, this chapter already has a personal bias as it is written from both sides of the bedpan! In this chapter, I hope to:

• look at the relationship between nursing and cancer care,

• discuss the emergence of the survivorship movement and its new semantics,

• examine nursing as it is today and how it relates to sur- vivorship, and

• explore the future of nursing in relation to long-term follow-up.

Nursing and Cancer Care

The term survivorship was not in the lexicon of cancer nursing when I was first diagnosed and treated for Hodgkin’s disease in the early 1970s. As a matter of fact, nurses who specialized in cancer care were few in number at that time. While nurses had always cared for patients with cancer, it was historically surgical and palliative care nursing. A few of the earliest examples of hospitals specializing in cancer care were Memorial Sloan Kettering, New York (1884), Roswell Park, Buffalo, New York (1911), and MD Anderson, Houston, Texas (1941), and surgery was, of course, the primary form of treatment.¹ Physicians were advisors and mentors to nursing staff who had the responsibility to make patients as comfortable as possible as this was typically all that could be done. Meanwhile, Renilda Hilkemeyer, a pioneer in oncology nursing, describes the early days when a handful of adminis- trators and educators started developing inservice programs, policies and procedures, nursing care manuals, and lectures

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specifically targeting this type of nursing.¹In the 1950s, the handful of colleagues who worked with cancer patients, yet were isolated geographically, began an informal phone network. Finally, the American Cancer Society (ACS) orga- nized a national nursing advisory committee that brought all of them together for face-to-face meetings.

Around this time, radiotherapy was added to the cancer treatment menu, and it was initially delivered by radiologists in general radiology departments and from low voltage machines.¹The treatments were crude and toxic, and nurses were once again challenged to treat the side effects when patients returned to the wards. They attempted to prevent infections, manage pain, and help the patient feel more com- fortable. Meanwhile, myths about cancer were abundant, such as being contagious or being a punishment for some sin or transgression, which led to fear and shunning.^2,3 Many patients were never told their diagnosis. Family members felt obligated to continue the charade of deception, and had to try and act cheerful and upbeat in arduous circumstances. Few could even utter the word cancer as the disease was consid- ered a death sentence. And many nurses themselves deliber- ately avoided working with this population of patients as it was perceived as being depressing.

With the advent of medical oncology in the 1960s, we saw the germination of a new sense of optimism and hope. Single drug therapy evolved into multiple drug combinations, and some cancers, like Hodgkin’s disease, became treatable.

Cancer care began its evolution into the specialized field called oncology, and was available in a select number of hos- pitals and academic institutions, including the ones men- tioned before. So, while I was learning about oncology as a patient, a small number of nurses around the country were learning about oncology as a new subspecialty.

Physicians involved in clinical trials and the development of new therapies often selected nurses to work with them as part of cancer care teams. With these new therapies came new jobs, positions, and on-the-job training. Many nurses found themselves working under medical rather than nursing supervisors. Cancer nurses developed and taught ostomy care, mixed drugs and gave chemotherapy, counseled patients and families, created patient education materials, collected data and specimens for medical research, and managed clinical trials. They also learned how to talk about and deal with death and dying as the majority of patients with cancer still died of their disease. And if cancer programs were really visionary and had the funds available, they may have added a social worker to the oncology team. Yet, while there was a new glimmer of hope for some people with cancer, nurses working in this new field often felt isolated from their own profession. There were few, if any, nursing colleagues to share experiences, solve problems, help with decision-making, or just be around for support. Even though some patients were now successfully treated, cancer care still took a huge toll on the professionals who worked in this area.

ACS again recognized this void for nurses, and invited anyone who was interested to attend a joint meeting with the National Cancer Institute on advances in cancer manage- ment. This was 1974. Nurses from oncology settings around the country met for the first time and discussed how they might establish some sort of formal networking and com- munication system for those who had been working in rela- tive isolation.¹The enthusiasm about this get-together was

palpable, and the group decided to meet soon afterwards at the next meeting of the American Society of Clinical Oncol- ogy (ASCO) and the American Association of Cancer Research (AACR). In 1975, the informal group with an inter- est in cancer nursing decided to create their own formal spe- cialty organization, and the Oncology Nursing Society (ONS) was founded. There was no way that Lisa Begg Marino, Cindy Mantz Cantril, Connie Henke Yarbro, and Daryl Maass Mathers could have envisioned what lay ahead of them in this endeavor. These were the first four officers of the fledgling ONS which has now grown to more than 35,000 members worldwide.

I attended my first national ONS meeting in 1976 as a neophyte oncology nurse. Cancer survivors were not even on the radar screen at that time. We were simply trying to find ways to deliver chemotherapy safely, treat debilitating side effects, and better support both patients and family mem- bers through the grueling cancer treatment experience. These were now nursing responsibilities, and all attention was focused on helping patients survive the traumatic therapies.

As a former patient who had received chemotherapy from a variety of physicians just a few short years before, I was elated to see this expertise transferred to nurses.

It would be a number of years, though, before ONS dis- covered survivorship and incorporated it thematically into programs and projects. Conceptually, though, oncology nurses have always been involved in supporting survivorship without necessarily knowing it.

Survivorship and Semantics

Shortly before ONS was organized, the term cancer survivor was used by the insurance industry to describe the loved ones left behind after the patient died. By the time oncology nurses became official members of cancer care teams, physicians were already seeing progress in disease-free survival, espe- cially in pediatrics. Survivors then came to be defined as those who lived beyond 5 years with no evidence of disease, and parameters were quantitative and strictly-defined within medical boundaries.⁴As pediatric oncology was the first to develop survivor clinics, their young patients were promoted or transitioned to this next step of follow-up care only after they survived for 5 years with no recurrence of the original disease.

While these parameters are needed in order to answer research questions and attempt to define and care for a very specific population, they can be limiting in that they don’t necessarily reflect individual survivor experiences. As more people who had been treated for cancer lived longer, questions arose as to the quality of their lives both during and after therapy. In 1986 a network of oncology professionals, cancer survivors, family members, and cancer organizations were invited to Albuquerque, NM by Catherine Logan Carrillo, the founder of (People) Living Through Cancer, a community based resource and support center.⁴Catherine’s vision was to address these issues of survival from a consumer perspective, and to develop a network of national and community organi- zations. At this ground-breaking meeting, the National Coali- tion for Cancer Survivorship (NCCS) was founded. Many in this founding group were professionals, including nurses and physicians, who also had personal histories of cancer. All had

a common interest in raising awareness about the complexi- ties of surviving cancer, about the unmet needs of those living beyond their treatments, and about the need to improve quality of life throughout the continuum of survival.

Fitzhugh Mullan (NCCS co-founder, physician, and cancer survivor) had written: “When could I say simply that I was cured? Actuarial and population-based figures give us survival estimates for various cancers, but those figures do not speak to the individual patient whose experience is unique and not determined or described by aggregate data.”⁵

The group decided that they needed to define their con- stituency, and a discussion about who is and is not a cancer survivor ensued. It must be noted that the initial defining exercise was to establish an organizational constituency.

Little did we know at that first meeting how this exercise would eventually lead to heated debates and arguments about who is or is not a survivor, and to the plethora of other labels that would eventually define this burgeoning population.

NCCS founders agreed to define survivor within the context of a continuum: “from the time of its discovery and for the balance of life, an individual diagnosed with cancer is a sur- vivor.”⁶ No one would be excluded as everyone’s survival issues would fall somewhere under one of the continuum stages. We would not be an elitist organization that would require members to be free of disease. And we would address the concerns and distress felt by family members and care- givers across the continuum of survival.

Besides defining survivor (the individual), NCCS also coined the term survivorship (the experience). While the term survivorwas already used by the pediatric community as a stage of survival after treatment, the concept of survivorship was first used within the context of cancer by NCCS. Over the years it has collected almost as many meanings as has the term survivor. Even the oncology community has defined

“survivorship” in different ways. From a biomedical perspec- tive, it has been characterized as

• a time frame (after 2, 5, or 10 years, depending upon the disease);

• as a stage or phase of survival (after initial treatment ends, complete remission); or

• as an outcome of treatment (no evidence of disease/NED or cured).

While these quantitative measurements help to categorize a new population of patients who have responded favorably to treatments, they fail to account for survivors who

• indefinitely require maintenance therapy;

• live with cancer that is controlled and considered a chronic illness;

• need periodic changes in treatment modalities;

• have a recurrence of the original disease;

• develop a second primary due to past therapy or genetic predisposition; or

• experience other late effects of treatment, such as prema- ture cardiac disease.

These inconsistencies clearly show how intricate the semantics become when the definers come from different per- spectives (i.e., from scientists, clinicians, caregivers, or those surviving the disease).

In order to illustrate the qualitative components of sur- vival, Mullan introduced his article, “Seasons of Survival” in the New England Journal of Medicine in 1985.⁵Mullan’s early

model of survival follows a linear format, and is seen as a pro- gression of events rather than formal, clinical stages:

• Acute Stage—Patient receiving treatment

• Extended Stage—Immediately posttreatment, remission

• Permanent Stage—Long-term survival

Carter soon after described her survival model as “going through.” This suggests that survival is a dynamic process rather than a static stage:⁷

Interpreting the diagnosis . . . Confronting mortality . . . Reprioritizing . . . Coming to terms . . . Moving on . . . Flash- ing back . . .

These two descriptions are the basis for the NCCS defin- ition of cancer survivorship as “living with, through and beyond cancer.”³Yet, these are not the only authors that have attempted to illustrate the survivorship experience as a con- tinuum. A few other early examples include the following:

Fiore, 1979⁸—Diagnosis . . . Preoperative care . . . Postopera- tive care recovery and adjustment . . . Postoperative therapy . . . Termination of active therapy or rehabilitation . . . and Post five-year survival

Mages & Mendelsohn,1980⁹—Discovery and diagnosis . . . Primary treatment . . . Remission, recurrence, dissemination . . . Terminal illness

Anduri, 1997¹⁰—Revelation (diagnosis) . . . Repture (surgery, therapy) . . . Reentry (therapy completed) . . . Regeneration (recovery)

The models above all depict a sense of movement or tran- sitioning through phases or stages, and come from medicine, nursing, psychology, sociology, and theology. While only Mages and Mendelsohn⁹have included death in their contin- uum, the lack of attention to this important phase of the life cycle warrants attention. Death is surely the end point for any and all models that illustrate life after cancer.

Nursing and Survivorship

How nurses relate to survivorship depends upon how they define the term and if they even have knowledge of this term.

If they see survivorship as the stage of survival that begins once initial treatment ends, then oncology nurses will have decreasing contact with cancer survivors. For a limited period of time, usually up to 5 years and often regulated by insur- ance plans, survivors will return to the clinic where they received care and have brief check-ups and diagnostic tests essentially to see if they continue to be in remission. Nurses may or may not see the returning survivor, and if they do, their encounter usually consists of a quick hello and pat on the back. Busy clinics, time constraints, and a focus on the acutely ill all require the full attention of most oncology nurses. The one exception is the oncology nurse practitioner (NP) who has become a specialist in long-term follow-up, and helps the physician with the survivor’s transition to post- treatment care.

Meanwhile, if survivorship is viewed as a process that begins at the time of diagnosis, then oncology nurses are attentive to survivorship issues along the extended contin- uum of care. A survival plan is often laid out shortly after diagnosis, and realistic strategies and hopes are modified over

time. Survivors and their families are supported medically and emotionally throughout treatment, and, hopefully, a sur- vivorship care plan is developed toward the end of therapy.

This would ideally include detailed summaries of all diag- nostic tests, surgeries, and cancer therapies, and the survivor begins the transition to life beyond cancer. Survivorship is not just about IF or HOW LONG patients live, but also about HOW WELLthey survive and, hopefully, thrive.

The many roles of oncology nurses include caregivers, clini- cians, educators and counselors. They also serve as authors, editors and lecturers. In addition they are researchers, rehabil- itators, and nurse practitioners. These diverse roles illustrate how oncology nurses are changing the way care is delivered, treatments are tolerated, and palliation is presented. They also are altering the way survivors recover.

From Then to Now

Examples of changes in oncology nursing over the past 3 decades are sometimes dramatic:

• When I first gave chemotherapy in 1976, emesis basins were stacked high right next to the patient’s chair. Today, patients eat lunch while receiving “chemo”!

• Thirty years ago, radiation “techs” offered day to day con- sistency and answered questions as well as they could.

Today, radiation therapy nurses are specialized, organized, and working together to advance nursing practice in this intricate area of technology and subspecialization.

• Toward the end of my chemotherapy and radiation therapy for Hodgkin’s disease in 1972, my schedule was often disrupted and finally discontinued due to bone marrow suppression. Today, colony stimulating factors keep schedules on time and with patients receiving optimal dosing.

• During the early days of oncology, a friend and colleague proposed looking at cancer survivors for her master’s thesis. She was told it was an unscholarly topic for nursing, and was asked to choose another area to study.

Today, Ph.D.’s in nursing are awarded to scholars researching survivorship.

• When oncology nursing began, “research” nurses assisted physicians with their medical research, including speci- men and data collection. Today, we have educated, pro- fessional, oncology nurses dedicated to related nursing research. Examples of their research include fatigue, pain, cognitive dysfunction, quality of life, family issues, sexu- ality, spirituality, psychosocial distress, reproductive problems, hormonal changes, and long-term survival.

• And, 30 years ago, survivors dreamed of reaching that magic 5-year mark, while today we dream about dying of old age.

But these dreams do not come without a price. As lives are extended, so too are the risks of developing late or delayed effects of treatment. Since there has been no systematic follow-up of the majority of adult long-term cancer survivors, we still have much to learn about the positive and negative aspects of treatments and survival. And major questions today include who will take responsibility to monitor the health of survivors, assist in their recovery, make appropriate referrals to subspecialists, and then pay for this type of con- tinued care. It is one thing to pay for research and treatment.

There must also be a commitment to pay for the continued care, rehabilitation, and psychosocial fallout after treatment ends.

Nursing and Long-Term Follow-Up

Since I attended that first NCCS gathering in 1986, I have had a dream. This dream is that survivors have continued access to systematic follow-up care by providers who understand our individual situations, have knowledge of potential risks, and can help us learn to be well again. This may be within oncol- ogy, with primary care, or with a combination of both. Close monitoring by the cancer care team is usually guaranteed for the first few years posttreatment, but the difficulty often begins once the survivor is no longer followed in the oncol- ogy clinic. Oncologists simply cannot continue to see all their long-term survivors while seeing new patients and managing those on active treatment. Yet, primary care and nononcol- ogy physicians don’t really know what to do with us. The need for guidelines for long-term care is vital, yet it will be years before they can truly become evidence-based. Hope- fully, consensus-based guidelines will help us fill this gap.

Meanwhile, nurses may be the most qualified oncology professionals to oversee specialized follow-up care, since many of them build on knowledge gained through delivering and monitoring treatments and managing side effects. They also develop relationships with family members and loved ones, assess for psychosocial problems, refer to appropriate specialists, and generally work within a model of wellness promotion rather than disease management. This model has worked beautifully in pediatric oncology. It has a much shorter history in the adult arena. But there is hope on the horizon. In the near future, oncology nurse practitioners will most likely play as active a role in adult follow-up care as they do in pediatrics.

Issues of long-term survival became a more noticeable pri- ority after the introduction of the NCCS’s Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability.¹¹NCCS published this report in 1995. Soon afterward, the Office of Cancer Survivorship (OCS) was estab- lished at the National Cancer Institute (NCI) with the direc- tive to focus on the needs of cancer survivors, and especially those with long-term and late effects of treatment. “Impera- tives” also identified nurse practitioners and oncology clini- cal nurse specialists as major players on a multidisciplinary team of healthcare specialists. It stressed health promotion and wellness in survivor clinics. It identified the continued need for access to supportive care services especially for minority populations. And it called for education and reha- bilitation for symptoms, such as fatigue, chronic pain, weight changes, and decreased stamina. These are all areas in which oncology nurses were already working and doing research.

Yet, while this report raised awareness about the continuing needs of long-term survivors, there was no plan to implement the recommendations. It would take another 8 years before the next report was published about issues of survivorship.

More recent governmental reports include the following:

• 2003—Childhood Cancer Survivorship: Improving Care and Quality of Life. A report by the Institute of Medicine (IOM), National Research Council of the National

Academies.¹² This extensive report, solicited by the National Cancer Advisory Board (NCAB), recommends developing guidelines for follow-up care of childhood cancer survivors; developing standards for comprehensive systems to deliver survivorship care; raising awareness of late effects; improving professional education and train- ing in the area of long-term survival; and increasing research in this area. Nurses were represented on the review board, and the National Institute of Nursing Research was included as a source for increased support.

Pediatric nurse practitioners are part of the report as they have always played a major role in developing and staffing survivor clinics.

• 2004—Living Beyond Cancer: Finding a New Balance.¹³ This report from the President’s Cancer Panel (PCP) at NCI differentiates survivor issues across the lifespan.

Over the course of a year, 5 panels were convened to look at age-specific issues, and many oncology nurses partici- pated. This report includes long-term health issues and follow-up care, legal and regulatory protections, problems with privacy and insurance portability provisions, access to education and information, availability of psychosocial and supportive care needs, health insurance, and surveil- lance and research.

• 2004—A National Action Plan for Cancer Survivorship:

Advancing Public Health Strategies.¹⁴ This report is jointly sponsored by the Centers for Disease Control (CDC) and the Lance Armstrong Foundation (LAF). Prevention and control of long-term and late effects of treatment present a new challenge to public health, another area with nursing implications. This proposed National Action Plan hopefully will be used as a guide to help decrease the burden of cancer, improve the quality of life of all Ameri- cans affected by this disease, and increase funding for sur- vivorship research and delivery of culturally appropriate care.¹⁴ Nurses were again represented throughout the entire process of meeting and developing the plan.

• 2005—For release in November 2006 is the much antici- pated report from the IOM entitled Cancer Survivorship:

Charting the Course to Improve Care and Quality of Life.¹⁵ This report will focus on adult survivors just as the 2003 IOM report focused on pediatrics. This report, more than any of the above, emphasizes the role of nursing in long-term follow-up care.

Another example illustrating the relationship between nursing and survivorship was a State of the Science Sympo- sium on Adult Survivorship convened by the American Journal of Nursing, July 15–17, 2005, in Philadelphia. Topics from nursing and related research covered much of the holis- tic spectrum of survival that encompasses physiological, psy- chological, social, and existential categories. While the main focus was on posttreatment survivorship issues, many of the papers covered symptoms that either began during treatment, lingered after therapy was completed, or surfaced months to years later. The proceedings and papers from this meeting were published as a supplement to the American Journal of Nursing,¹⁶and implementation of projected projects will be encouraged.

Yet another report specific to nursing is a white paper on Nursing-Sensitive Patient Outcomes (NSPO’s).^17,18 In this paper, ONS challenges oncology nurses to get involved with

both research and implementation of NSPO’s as this is where nursing makes a difference in oncology care. While medical outcomes describe mortality, morbidity, and disease-free sur- vival, nursing outcomes represent changes in symptom man- agement, functional status, safety, psychological status, or costs.^17,18Nurses invest heavily in patient/survivor care, and attention to the results of that care is increasingly important.

According to the authors of this white paper, “Outcomes matter to decision makers—patients, providers, private payors, government agencies, regulators, standards-setting organizations, and professional organizations—and society at large.”¹⁸The continuum of care associated with these NSPO’s include:

Prevention . . . Early detection and diagnosis . . . Initial treat- ment . . . Continuing care . . . Maintenance . . . Follow-up . . . Recurrence/progressive disease . . . and palliative/end-of-life care

There is no mention of survivorship as a stage. Rather, sur- vivorship could be seen as the overall umbrella that unites these phases of the survival continuum.

Conclusions

After all these years with minimal attention given to sur- vivorship issues, the topic is finally gaining momentum. Pedi- atric oncology identified this area as needing continuing attention well over 20 years ago. The advocacy community followed suit shortly thereafter, and a proliferation of organi- zations have incorporated survivorship in their missions.

ONS offered its first session on survivorship at the 1987 Con- gress, and currently includes a Nurse Survivors Focus Group (NSFG), a Survivorship Special Interest Group (SIG), and a plethora of nursing researchers studying issues around this topic. While a mere handful of adult oncologists have been dedicated to researching and writing about long-term and late effects, cancer survivorship is now on ASCO’s agenda. And LAF is now helping to fund the establishment of survivor clinics. The tide is finally turning. My question remains,

“Why has it taken so long?” Some believe we have reached a critical mass and the population and issues can no longer be ignored.

The Office of Cancer Survivorship has estimated that 14% of the overall population of cancer survivors has sur- vived for over 20 years, and this number most likely repre- sents a growing number of survivors who were diagnosed at younger ages. The longer we survive, the greater our chances are of developing delayed or late effects from therapies. While many of us have been diagnosed with second malignancies and have had our current treatments adapted due to prior therapies, we continue to live on with varying degrees of dif- ficulty. Others are struggling to find providers who under- stand the challenges of assessing the symptoms of someone treated years ago for cancer. Frustration levels run high when survivors concerns and fears are minimized, or the costs of diagnostic tests or follow-up care are denied, or someone dies unnecessarily because an appropriate diagnosis was delayed.

But hope is on the horizon. The book, The Tipping Point, is about a theory of social epidemics. It discusses the mo- ment of critical mass, the boiling point when an idea or trend finally explodes and spreads to the masses.¹⁹While we have

8. Fiore NA. Fighting Cancer—one person’s perspective. N Engl J Med 1979;300:284–289.

9. Mages NL, Mendelsohn GA. Effects of cancer on patient’s lives: A personological approach. In: Stone GC, Cohen R, Adler NE, eds.

Health psychology—a handbook. San Francisco: Jossey-Bass;

1980.

10. Anduri J. Surviving cancer: a sacred journey for the nineties. Paper presented at: A Family Journey Through Breast Cancer, Colum- bia Memorial Hospital; 1997; Jacksonville, FL.

11. National Coalition for Cancer Survivorship. Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Account- ability. Silver Spring, MD: 1996.

12. Institute of Medicine. Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC: National Academies Press; 2003.

13. National Cancer Institute. Living Beyond Cancer: Finding a New Balance. Available at http://pcp.cancer.gov.

14. Centers for Disease Control and Prevention and the Lance Arm- strong Foundation (LAF). 2004. A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Available at http://www.cdc.gov/cancer/survivorship/what_cdc_is_doing/

symposium.htm, accessed September 24, 2006.

15. Hewitt M, Greenfield S, Stovall E (eds). From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press, 2006.

16. AJN. State of the science: Nursing and cancer survivorship. Am J Nursing. March 2006;106.

17. Given BA, Sherwood PR. Nursing-sensitive patient outcomes—A white paper. Oncol Nurs Forum 2005;32:773–784.

18. Rutledge D. ONS leads the way in oncology nursing-sensitive out- comes research. ONS News. July 2005:20.

19. Gladwell M. The Tipping Point: How Little Things Can Make a Big Difference. New York: Little, Brown & Company, 2002.

witnessed a geometric progression of interest within the sur- vivorship movement, we have yet to identify a singular dra- matic event that changed the course of awareness surrounding survivorship. So, maybe it is a critical mass of multiple exposures that have been building over the past 3 decades.

Advocates, activists, physicians, researchers, social workers, mental health specialists, public policy makers, payors—and, of course, nurses—are all working together to help us survive survival. I applaud everyone who has been in the trenches fighting to get survivorship on the radar screen. But our work has just begun. Hopefully, the wisdom within these pages will help to shed light on the magnitude of the situation, and impel others to join us in this significant campaign.

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