Robyn was 63 years old when she was diagnosed with Stage III ovarian cancer. After recovering from a total abdominal hysterectomy and oopherectomy, she traveled to a comprehensive cancer center to consult with a physician specializing in ovarian cancer. She took her entire collection of pathology slides and reports, laboratory and imaging study reports, and the summary of her surgical procedure.
She made it clear that she did not want to travel for treatment, but instead wanted to go home with a treatment plan that could be followed by her local medical oncologist. Her treatment team worked together to meet Robyn’s needs and to follow her wishes.
After completing adjuvant therapy, Robyn resumed her busy lifestyle. She and her husband provided a loving home for two granddaughters. She served as a docent at a local museum; made scuba diving trips around the world; and continued to build her expertise in underwater photography, hosting a one-woman show at a local art gallery. She celebrated her 70th birthday in Bangkok with her husband and diving buddies.
Robyn was under no delusions that her cancer had been cured, but instead dealt with it as a chronic illness to be monitored and managed. She consulted with her gynecologic oncologist annually, and adhered to the follow-up plans recommended by her treatment team. In fact, she experienced several recurrences— asymptomatic, but heralded by increasing CA-125
levels. With each recurrence, she would undergo another chemotherapy regimen, and then, as soon as possible, take another planned dive trip. Over the course of her illness and therapy with the usual array of chemotherapy agents used for ovarian cancer, she developed painful, progressive, and permanent peripheral neuropathy that especially affected her legs and feet. Walking was painful and difficult. She discovered that swimming brought complete relief of her neuropathic pain, so she swam regularly at a local fitness center, and of course, continued her dive trips. Robyn was not the least bit shy about asking fellow-travelers for help with her luggage. She often told her friends, “I can’t die yet…I still have frequent flier miles!”
Introduction: The Necessity of Breaking the Silence
As every oncology nurse learns at the outset of his or her career, the three major goals of cancer treatment are cure, control of disease when cure is not possible, and palliation of distressing symptoms. The vast majority of oncology nursing literature focuses on dealing with side effects and symptoms that occur as a result of cytotoxic therapies and on symptom management for patients who are at the end of life. Although Robyn’s story is one of hundreds of thousands of stories that reflect the courage and tenacity of people living with advanced cancer, there is scant literature documenting the needs of and guiding creation of services for this population.
The Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, a pivotal document that provides a foundation for much of the current focus on cancer survivorship, specifically excludes from its attention survivors living with persistent and/or recurrent cancer.
Most available literature relating to persons with advanced cancer focuses on issues among people who are dying. There is confusion about the term “palliative care,” with most palliative care literature relating to end-of-life interventions. Most survivorship literature has focused on individuals who have completed treatment and have no evidence of disease. Journal articles and information available from resources such as patient teaching information, trade books, and the Internet primarily relate to treatment choices and, once again, to the management of acute symptoms and side effects arising from treatment.
It is revealing that in the breast cancer population, arguably the most studied of all cancer patient and survivor populations, the needs of women living with advanced disease, such as Robyn, are rarely addressed in the clinical and research literature. Advanced breast cancer advocate and breast cancer survivor Musa Mayer notes that “this patient group remains dramatically understudied,”adding that “you can not serve or advocate for the needs of a patient group whose dimensions have never been measured.” (Personal communication, October 11, 2008.) Survivors living with advanced breast cancer are, says Mayer, a “forgotten population.”
Who, How Many, and How?
Newsweek columnist Sharon Begley describes journalists’ blueprint for writing about cancer: uplifting accounts of people whose cancer was detected early and eradicated by one of the new “rock star” therapies, and who remain alive and cancer-free decades later. These upbeat stories of survival overlook the experience of people living with advanced and metastatic disease, often leaving these survivors feeling ignored and viewed as cancer’s “dirty little secret.” In reality, metastatic disease has been and remains the most common cause of morbidity and mortality for people with cancer.
Based on American Cancer Society data and Surveillance, Epidemiology, and End Results (SEER) stage categories, an estimated 19% of the 1.5 million people diagnosed with cancer each year—more than 1 million—have distant or advanced disease at the time of diagnosis. We know that more than 500,000 Americans die each year with cancer indicated as the cause of death, and we can conclude that these people lived for a time with advanced disease. Nevertheless, we cannot say how people live with advanced cancer.
In the preface to her book, Ready to Live: Prepared to Die, Amy Harwell tells of her response to the question she is often asked: “What’s your secret to being at peace with your diagnosis of advanced cancer?” Her “secret” is simple: “I had worked through my dying to go on with my living. I believe that once we have prepared to die, we are really freed to live in whatever time we have left.” Harwell uses the metaphor of taking a journey, providing details of the tasks associated with preparing to die, such as working through the many choices confronting people living with advanced disease—preparing advance directive documents and instructions, exploring questions related to so-called heroic efforts and suicide, and a host of other fears. Nessa Coyle’s work exploring needs among people receiving palliative care, revealed the dimensions of what she calls the “hard work of living in the face of death,” and reflects Harwell’s experience in many ways.
Needs of People With Advanced Cancer: What Is Known?
Despite the paucity of strong levels of evidence, there are data from which we can take direction. We can begin by acknowledging that the population of individuals living with advanced cancer has unique and often unmet needs. We can advocate for a research agenda to document and address these needs more effectively, and ultimately, craft evidence-based assessments, interventions, programs, and services. Until such evidence accumulates, we can use the limited research findings available, consensus reports and recommendations, and our tacit knowledge, and listen and respond to the needs expressed by people living with advanced cancer.
Additional research exploring the physiologic, psychosocial, and spiritual needs of this population is needed for the growing population of people living with advanced cancer. There is much to be learned from the population of women, estimated to be at least 150,000, who are living in the US with metastatic breast cancer. The Institute of Medicine Report, Meeting Psychosocial Needs of Women With Breast Cancer, acknowledged that addressing symptomatic and pain relief needs of women with advanced breast cancer (ABC) is central to their emotional and physical well-being.
Syrjala and Chapko outlined a biopsychosocial model illustrating the interplay of somatic and psychosocial issues, positing that unrelieved pain diminishes social role functioning abilities. Numerous studies highlight spiritual and existential concerns as a hallmark of this phase of illness, and suggest that at this stage of illness, women should focus on legacies to their families and engage in planning for their children’s lives.[8,11–13]