A few months ago, a good friend and colleague was diagnosed with breast cancer and underwent a mastectomy. It's something that happens to hundreds of women every day. But Deb's story is different. And while her story is exceptional, it is not uncommon among cancer survivors.
Deb had been diagnosed with Hodgkin disease as a newlywed, over 20 years before. She was one of several family members, including a sister, to have this form of cancer; she alone survived the disease. Her treatment consisted of surgery and radiation therapy. She experienced treatment-induced menopause and subsequent infertility, a late effect which she was not informed about until after therapy had started. With the expertise of fertility specialists, Deb eventually gave birth to a daughter and a son. She became a nurse after this first cancer experience-and after her sister's death. She found a new life and a new career and became an ardent cancer activist.
Just a few years ago, Deb found skin lesions within the old radiation therapy field. The lesions were diagnosed and treated as basal cell carcinomas. Last spring, Deb found a breast mass and at this writing is in the midst of postoperative chemotherapy. It's impossible to say definitively whether her previous cancer therapy caused Deb's subsequent cancers, but odds are that this is the case.
The problems don't stop there. The effects of the earlier therapies have impaired Deb's heart, lungs, and immune functions and damaged her carotid arteries and other vascular structures. As a result, chemotherapy regimens must be changed. Vascular access is now a major problem. She's experienced thrombosis and sepsis, been hospitalized, and become oxygen dependent.
Deb's a fighter, and no one doubts that she'll bounce back and be an even more passionate advocate for survivors of cancer. Unfortunately, many of the nearly 10 million survivors of cancer are at risk for experiences similar to Deb's.
More than 30 years have elapsed since the passage of the National Cancer Act advanced major efforts in the search for effective cancer therapies. Therapeutic successes are common today, reflected in the millions of Americans now living after cancer diagnoses. According to the American Cancer Society's Cancer Facts and Figures 2005 (http://www.cancer.org/downloads/STT/CAFF2005f4PWSecured.pdf), the five-year relative survival rate, for all types of cancer combined, is 64%. But survival often comes at a significant cost-psychosocial, physiologic, spiritual, and existential long-term and late effects are increasingly recognized. Many don't become evident until years after completion of therapy.
With long-term survival now a reality, many survivors find a "new normal" in their lives after cancer. They return to work, go to school, participate in recreational activities, and form and nurture families, friendships, and other relationships. But survivors of cancer frequently experience long-term changes and obstacles, such as impaired immune response, vital organ dysfunction, hormonal changes resulting in infertility, altered sexual function, cognitive changes, ongoing fatigue, depression, anxiety, family distress, and economic challenges, to mention only a few.
Professional and scientific interest in these problems has only recently emerged as a priority in the oncology community. However, after initial diagnosis, treatment, and follow-up, cancer survivors are most often cared for by providers who aren't oncology specialists. As nurses, we can assume leadership roles in helping survivors plan for optimal lifelong health. Competent and comprehensive care for survivors requires that all nurses understand and assess for the broad range of long-term sequelae whenever they evaluate at-risk patients, whether in primary care, home care, the emergency room, medical-surgical unit, occupational health, or other health care setting.
Organizations like the National Coalition for Cancer Survivorship, the Lance Armstrong Foundation, the Centers for Disease Control and Prevention, the Institute of Medicine, the National Cancer Institute's Office of Cancer Survivorship, the President's Cancer Panel, and other professional, consumer, and advocacy organizations have been raising awareness of long-term cancer survivors' needs. In fact, we are at a pivotal moment. Published reports from several of these organizations identify the need for evidence-based guidelines to address the sequelae of cancer and its treatment and the need for a national database cataloging the experiences and health problems of survivors. (See page 7 for a list of these reports.)
One of the unintended consequences of such focused attention on long-term cancer survivors is the competition for limited fiscal and human resources, as well as turf battles among organizations for visibility and leadership status. Many organizations have survivor-related programs and projects; some efforts are similar and even duplicate each other. Although some aspects of program or project ownership and accountability are positive, turf battles can impede progress. Meaningful efforts to address survivors' needs call for collaboration within and beyond the cancer community. It is imperative that we work together to improve available services. The efforts must be inclusive, collaborative, and community wide. There is no room for self-interest.
Nurses can be catalysts. We are clinicians, educators, researchers, administrators, and advocates. The traditionally holistic focus of nursing positions us to help survivors with individualized, proactive, and wellness-oriented plans for health, regardless of setting.
For example, we can
* learn about survivors' needs and share this information with colleagues.
* make assessing and addressing survivors' needs the standard practice, not the exception.
* take steps to ensure that community resources match the needs of survivors.
* conduct, participate in, and support research to find appropriate interventions for sequelae of cancer and its therapy. We can accomplish all this and more if we collaborate with colleagues.
We also need to encourage cooperation and collaboration among our professional associations and advocacy groups.
All nurses should assess for long-term sequelae whenever they evaluate cancer survivors.
ABOUT THIS SUPPLEMENT
An invitational symposium was held in Philadelphia in July 2005. Its focus was adult cancer survivors: those who have completed initial cancer therapy and are disease free, as well as those who continue to live with the disease. The symposium participants were mostly, but not solely, nurses. Many were cancer survivors.
This supplement arises from that symposium. It reviews what we know and don't know from research on selected health problems that long-term cancer survivors face. It also identifies barriers to improving health care for this population and strategies for overcoming these barriers. We encourage you to read the supplement, share it with colleagues, discuss your own approach to caring for long-term cancer survivors, and take the necessary steps to improve what you and your health care organization offer this population.
We need not wait for others to initiate change. We-and the cancer survivors among us-have waited long enough. Nurses know how to get things done. With the power, energy, and commitment of individual nurses and of the groups in which we participate, we can address nursing implications of long-term and late sequelae of cancer and its treatment and inspire the collaboration of others to accomplish what must be done.