Catálogo de publicaciones - libros

During the past three decades since the declaration of a war on cancer with the National Cancer Act of 1971, we have been exposed to a very public display of both the challenges and triumphs in this war. As a young medical oncologist, I anxiously awaited each annual meeting of the American Society of Clinical Oncology (ASCO), expecting to hear the latest small advances in the treatment of leukemia, lymphoma, Hodgkin’s disease, and then breast cancer (the first solid tumor that seemed to respond to multiagent chemotherapy), gradually seeing plateaus in the survival curves suggesting cure. With the phase II trials of cisplatinum, there were rumors of young men with advanced testicular cancer rising from their deathbeds after a single course of treatment. Soon thereafter, the Einhorn regimen 1 of vinblastine, bleomycin and cisplatin, brought about high cure rates in this rare but devastating cancer of young men. And of course, three decades later we all know the story of Lance Armstrong, one of the world’s most famous testicular cancer survivors. However, as the breast cancer activists reminded us in the early 1990s, there were still more American women dying each year from breast cancer than U.S. deaths during the entire Vietnam War. 2 *

When 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 perspective 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.

The cancer survivorship movement became part of the American scene in the 1980s with cancer patients and a physician survivor leading the way. 1 – 5 Cancer survivorship became a force as a result of medicine’s focus on finding solutions to the problems of cancer following World War II. These solutions included the success of chemotherapy treatment in the 1960s, research into late effects and psychosocial research following cancer treatment (1970s), and the patient activist movement beginning in the 1980s. Oncology social workers have played a major role, being on the scene since the early days, delivering supportive services to cancer survivors, participating as team members in psychosocial research, and serving as members and leaders in survivorship organizations. 6 This chapter examines survivorship from the perspective of a cancer survivor and oncology social worker, one who enjoys both clinical work and research.

In 1884, an official ceremony was held and the cornerstone laid for an ornate and turreted building in New York City that would for many years house the first cancer treatment center in the country. The site, located on the upper west side of Central Park, then a virtual wilderness area on the larger island of Manhattan, was selected because the belief at the time was that cancer was contagious. The rounded design of the towers, where patient beds were to be located, was intended to discourage the risk of germs, which were thought to lurk in corners. Named The New York Cancer Hospital, this institution would later be moved in 1948 to its current east side location where it was, until 1960, called the Memorial Hospital for Cancer and Allied Diseases. The history of this leading center for cancer care and research, known today as the Memorial Sloan-Kettering Cancer Center, a sprawling multisite enterprise, is illustrative of where we have come in viewing cancer. 1

Primary treatment for cancer is often a very regimented experience, with schedules and protocols. These provide comfort to patients because of their certainty. Constant contact with the medical staff helps patients feel that everything must be under control for now, and that if anything develops, someone will notice it. Yet as the end of treatment approaches, it is not uncommon for anxiety levels of patients to rise.

With continued advances in strategies to detect cancer early and treat it effectively, along with the aging of the population, the number of individuals living years beyond a cancer diagnosis can be expected to continue to increase. Statistical trends show that, in the absence of other competing causes of death, 64% of adults diagnosed with cancer today can expect to be alive in 5 years. 1 – 4 Relative 5-year survival rates for those diagnosed as children (age less than 19 years) are even higher, with almost 79% of childhood cancer survivors estimated to be alive at 5 years and 75% at 10 years. 5

More than 12,000 children and adolescents younger than 20 years are diagnosed with cancer each year in the United States. 1 With the use of risk-based therapies, the overall 5-year survival rate is approaching 80%, resulting in a growing population of childhood cancer survivors. 1 In 1997, there were an estimated 270,000 survivors of childhood cancer; over two-thirds of these were older than 20 years of age. 2 This figure translates into 1 in 810 individuals under the age of 20 and 1 in 640 individuals between the ages of 20 and 39 years having successfully survived childhood cancer.

The first attempts to treat Hodgkin’s disease by radiotherapy were conducted at the beginning of the last century. The prognosis for survival was poor but slowly improved by the use of radiotherapy and some chemotherapy until 1960. For example, in 1939 a 20-year survival rate of 17% was reported. 1

Testicular cancer (TC) is the most frequent malignancy in men between 20 and 40 years of age, and the annual incidence rates are continuously increasing in the Western world. 1 Since the introduction of cisplatin-based chemotherapy, at least 90% of the patients are cured, 2 and testicular cancer survivors (TCSs) currently have a life expectancy similar to that of age-matched normal men, with posttreatment life spans of 30 to 50 years. Thus, an increasing number of TCSs experience survivorship problems related to the malignancy, its treatment, or both.

An emerging body of research has documented the quality of life of women with gynecologic cancer around the time of diagnosis and during treatment. However, we know much less about the quality of life and psychosocial and medical needs of gynecologic cancer survivors after treatment. 1 , 2 In particular, there are very few studies documenting the risk of possible late medical effects of gynecologic cancer treatment such as osteoporosis and second primary cancers. More is known about self-reported symptoms and psychosocial sequelae, such as sexual functioning and psychologic distress, but even these studies rarely focus on survivors more than 5 years after diagnosis. Additionally, much of the extant research has limitations such as small sample sizes, nonstandardized measures, and cross-sectional designs, often without appropriate comparison groups. Finally, there is a dearth of research testing interventions to ameliorate problems experienced by gynecologic cancer survivors. While in some areas additional research is needed to better describe the sequelae and determine who is at risk for adverse late effects, in others areas (e.g., sexual functioning), adequate data describing the problem are available, and a stronger focus on treatment interventions is needed (see also Chapter 19).