In her 1978 book, Illness as Metaphor, Susan Sontag challenged the notion that illnesses such as cancer said something about the character of the sick person. At the time, cancer was seen as a kind of punishment for suppressing emotion. A year later, Woody Allen used this metaphor in his film, Manhattan, in which the character Isaac Davis says, "I can't express anger. That's one of the problems I have. I grow a tumor instead."
Sontag's work helped shift our thinking about cancer; it morphed from a shameful disease of defective people to an evil enemy to be battled with ferocity and pride. Today, some people who have lost their hair as a result of chemotherapy remain bald as a badge of courage. Lance Armstrong is the poster child of the new paradigm-cycling in defiance of cells gone awry.
But the new and improved cancer paradigm can be as hard on people as the one it replaced. Surviving cancer can be a lifelong battle-one that patients too often fight alone. Health care professionals are woefully unaware of the physical and psychological after-effects of cancer and its treatment. In From Cancer Patient to Cancer Survivor: Lost in Transition, 2006, the Institute of Medicine concludes that our health care system fails cancer survivors by declaring their battle won simply because they live five years past the original diagnosis. If they get sick after that, survivors may have a hard time finding a provider who recognizes their symptoms as long-term sequelae of cancer treatment. Survivors also may be unable to qualify for health insurance, setting them up for financial ruin if new cancers or health problems appear.
Cancer has morphed from a shameful disease to an evil enemy.
Projections show that about a third of women and half of men will have cancer in their lifetimes. According to the National Cancer Institute's "Cancer Trends Progress Report-2005 Update" (http://progressreport.cancer.gov/highlights.asp) patients are living longer; 64% of people survive at least five years after cancer diagnosis, compared with 50% 25 years ago. This underscores providers' need for more awareness and knowledge of issues of survivorship.
In July 2005 AJN joined with the American Cancer Society, the National Coalition of Cancer Survivors, and other organizations to host the State of the Science on Nursing Approaches to Late and Long-term Sequelae of Cancer and Cancer Treatments. (See "Executive Summary," page 54; the full report is online at http://www.nursingcenter.com/ajncancersurvivors.) We invited a few cancer survivors to participate in this symposium to humanize the science, but quickly discovered many more survivors in the room, though they came to the meeting for other reasons. Personal stories were shared. One participant who survived a lymphoma as an adolescent was now facing a mastectomy. Another, who frequently left the meeting for the bathroom, later confided that cancer treatments had damaged her bladder.
After undergoing specialized care during cancer's acute phase, survivors often return to community providers who may not be aware of the potential aftereffects of cancer and its treatment. Nurses need this knowledge to assess, counsel, and refer patients. In this month's AJN, symposium leaders Pamela J. Haylock and Carol P. Curtiss, along with participant Rebecca Hawkins, have written about how to determine whether a patient is a cancer survivor and experiencing long-term problems (see page 48). Symposium participants also recommended that nurses use a wellness approach in assessing survivors.
Sontag was 45 when she wrote Illness as Metaphor. She'd undergone treatment for stage 4 breast cancer with lymph-node involvement; she had a poor prognosis. Yet she survived for many more years until a new cancer killed her at 71. Sontag's experience illustrates the long road survivors can travel, with many battles along the way. Reaching the five-year post-diagnosis milestone is an accomplishment worthy of celebration. But nurses and other clinicians have an obligation to continue to support cancer survivors in their goals of wellness and prevention for as long as they need it.