Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program
Late Effects After Cancer
“Late Psychological Effects of Cancer & Its Treatment” a personal reflection by Jennifer Edens Simmons
Like so many of us, as I was growing up in the seventies, the very word "cancer" was essentially synonymous with death itself. But because of the tremendous advances in treatments developed for cancer since that era (there are approximately one hundred types), close to 10 million cancer survivors are alive in the United States today. Two out of three adults will survive their malignancies. Paradoxically, however, medical treatments that allow patients to conquer these diseases physically often fail to adequately address the unique psychosocial needs of this growing number of survivors.
Many assume that once cancer therapy is over, the treated individual can relax and effortlessly return to his or her former life as it was before diagnosis. However, this is often a highly stressful, sometimes terrifying period for many. As Elizabeth McKinley, a physician and cancer survivor, recalls her own feelings when her treatments ended, "Instead of joyous, I felt lonely, abandoned, and terrified... We (survivors) just move from the quantifiable, treatable disease to the immeasurable uncertainty of survivorship. Believe me, the former is easier to deal with sometimes."1
As a cancer survivor myself, I was thrilled to be able to participate in a recent conference addressing multiple issues surrounding survivorship. Organized by the American Cancer Society and the National Cancer Institute and supported by the Lance Armstrong Foundation, this program highlighted the critical work being conducted by numerous researchers and physicians across the country. It confirmed that survivorship science is a burgeoning, crucial area of medicine and psychology developing rapidly in response to the growing numbers of individuals whose lives are touched by cancer, many of whom move beyond it.
Among multiple topics covered at the conference, I chose to focus on the late psychological effects of cancer and its treatment. This was a particularly poignant subject for me personally because, like Elizabeth McKinley, I often felt overwhelmed by the emotional burden of a possible recurrence. I struggled with how to most effectively deal with the anxiety associated with having gone through an unexpected life-threatening illness, particularly at a young age. I wanted to know what specific suggestions were proposed by researchers studying cancer survivors. For instance, was there anything I could do to alleviate my often intractable angst?
I was especially interested in the presentations of two researchers, Dr. Annette Stanton of UCLA and Dr. Frank J. Penedo of the University of Miami. Each addressed the particular psychological needs of those who had undergone cancer therapy, and examined the efficacy of several post-treatment psychosocial interventions in allaying emotional distress. I was curious about their findings not only because they held the promise of offering coping techniques for cancer patients in general, but also because they contrasted the unique needs of both men and women who face gender-specific malignancies. Dr. Stanton’s research emphasis was on breast cancer survivors, while Dr. Penedo concentrated on men who had been treated for prostate cancer.
At the beginning of her presentation, Dr. Stanton introduced a term which I had never heard before: the "re-entry phase."2 She defined this as approximately the year following completion of primary treatments. It is commonly thought that people are relieved upon learning that something they have experienced actually has a name; it certainly made me feel good to know that the difficult year I had weathered following my chemotherapy had an official label within the medical community!
Dr. Stanton described two studies she had conducted, only one of which I will cover in this paper. Her clear goal in both cases was to identify those strategies which most effectively helped women previously treated for early-stage breast cancer combat anxiety related to their disease, as well as to their lives after treatment cessation. Her studies were motivated by the fact that re-entry transition for women with histories of breast cancer is understudied despite a large population of survivors (over two million), and by the widespread problems of recurrence fears, lack of social support, and lingering post-treatment symptoms.
In one study, Dr. Stanton evaluated 60 women within 20 weeks of treatment cessation. The women were asked to write about one of three randomly assigned topics in four 20-minute sessions over a period of several weeks. After 3 months, she assessed their physical complaints, the number of times they had made medical appointments for physical symptoms, and their general levels of psychological distress. Noteworthy conclusions of this study were that women who wrote about their deepest thoughts and feelings reported the fewest physical symptoms and doctor visits among participants; that those who had begun the study in greatest denial of their illness derived the most obvious benefits from writing about positive aspects of their cancer experiences; and that patients who had initially exhibited low levels of denial benefited most from writing about their deepest thoughts and feelings. Clearly, there was notable distress reduction for many women who shared highly specific aspects of their cancer experiences on paper.
In contrast, Dr. Penedo’s study was conducted in a group setting.3 Most of his 255 participants were at least 9 months post-treatment, and the majority had localized disease. Because approximately 50 percent of men with a history of treatment for prostate cancer have problems with sexual functioning and many have urinary problems, too, there are numerous physical as well as emotional challenges faced by this group.
Over a period of 10 weeks, Dr. Penedo’s participants attended 2-hour sessions once a week, during which a wide range of relaxation and stress management topics were discussed. As a result, many reported increases in urinary function and improvement of negative moods. Those who benefited most from these sessions, physically and psychologically, were men whose anxiety levels had been highest at the beginning of the study. Dr. Penedo’s research focused on the power of group-based interventions and their role in stress reduction, and participants emerged from his sessions with less anxiety and depression in addition to improved coping skills. Overall, their quality of life had significantly improved as a result of participation in his study.
Although Drs. Stanton and Penedo studied populations with remarkably different sets of problems related to their specific cancer types, the common thread between them unifies survivors of all cancers, as well as those who have faced any life-changing illnesses. Anxiety and depression are difficult, if not impossible, to avoid altogether when one is faced with such a formidable challenge, but we are beginning to understand how to mitigate the negative consequences of serious illnesses. Ever-expanding research gives us the tools we need in order to develop coping mechanisms. Whether it be journaling, attending support groups, or involving oneself in charitable organizations, opportunities for positively managing the late effects of what used to be an almost universally devastating disease abound. Elizabeth McKinley stresses the therapeutic benefits of support groups as well as writing in her account of coping with survivorship: "Probably the most important tool for me has been a support group of extraordinary women with whom I can share all my fears and successes…finally, writing about what I was feeling throughout my cancer process has allowed me the freedom to express myself and a safe place to kick and scream and call it all unfair." 1
Choosing an expressive way to counteract the often negative psychological aftereffects of cancer and its treatment enables survivors to channel their energies in hopeful directions. As Jerome Groopman, a physician who has studied the spiritual lives of patients with serious illnesses for years, eloquently sums it up: "Clear-eyed hope gives us the courage to confront our circumstances and the capacity to surmount them." 4
1 McKinley, E.D. 2000. Under Toad Days: Surviving the Uncertainty of Cancer Recurrence. Ann Int Med 133:479-480
2) Stanton, A.L.: Psychological Intervention for Breast Cancer Patients in the Re-entry Phase: One Size Does Not Fit All
3) Penedo, F.J.: Psychosocial Interventions Following Treatment for Prostate Cancer
4) Groopman, Jerome: The Anatomy of Hope: How People Prevail in the Face of Illness