By Jeannine Walston

“I feel like I’ve been given an extra life!” exclaims Anita Johnston‚ a spirited 72–year–old living in Long Island‚ New York. Diagnosed in 1990‚ Johnston has survived three bouts with lung cancer‚ including metastases to her liver and adrenal glands.

She remembers that‚ before cancer‚ her identity was almost lost in mundane activities‚ but her cancer experience led her to deciding not to “waste my life.” She continues to enjoy jazz‚ the symphony‚ and the arts. Johnston also spends time inspiring hope in others affected by cancer. She participates in national patient advocacy and educates senior citizens about the Early Lung Cancer Action Program‚ which offers free diagnostic scanning.

Johnston describes this new vitality for life by proclaiming‚ “Every day I wake up‚ I tell myself‚ ‘It is today!’ Every moment is much more precious.”

Finding the “New Normal”
For the more than 1.2 million Americans diagnosed with cancer each year‚ the crisis of the physical body is often accompanied by a psychological and philosophical crisis.

Indeed‚ research shows that a life crisis such as cancer can shatter assumptions about one’s identify‚ safety‚ and invulnerability. Social cognitive researchers such as Ronnie Janoff–Bulman‚ PhD‚ author of Shattered Assumptions: Towards a New Psychology of Trauma‚ theorize the degree to which this occurs often depends upon the magnitude of the trauma. Cancer may cause a person to strive to understand more fully the person before cancer compared to after and change their belief systems and attitudes in an effort to integrate their “new normal.” For patients and caregivers‚ this can be a tremendously confusing‚ yet positive period of growth.

Posttraumatic Growth?
Posttraumatic growth (PTG)‚ the term coined by psychologists Richard G. Tedeschi‚ PhD‚ and Lawrence G. Calhoun‚ PhD‚ in 1995‚ addresses the positive life changes that arise from traumatic experiences‚ exploring both the process and outcome of trauma‚ with an emphasis on growth. In Posttraumatic Growth: Positive Changes in the Aftermath of Crisis‚ Drs. Tedeschi and Calhoun call PTG “the antithesis of posttraumatic stress disorder‚ emphasizing that growth out–comes are reported even in the aftermath of the most traumatic circumstances and even though distress coexists with this growth.”

In the last 20 years‚ increasing research has explored the benefits accompanying the experience of trauma. However‚ studies do not pre–sent a consistent or comprehensive way of assessing growth that would allow researchers to compare results in varied situations.

Drs. Tedeschi and Calhoun based their findings on Posttraumatic Growth Inventory (PTGI)‚ which they developed to measure patients’ self–perceptions of positive change after trauma in five major areas: personal strength‚ appreciation of life‚ new possibilities‚ experiences of relating to others‚ and spiritual change.

Julia Rowland‚ PhD‚ director of the National Cancer Institute’s (NCI) Office of Cancer Survivorship‚ says that the medical model has historically focused on psychological dysfunction due to the perception of cancer as a deadly disease. “As survival rates increase‚ and we learn more about the potential for PTG‚ researchers will strive to understand what allows traumatized people to grow‚” Dr. Rowland says. “We’ll be able to develop interventions that promote optimal coping and functioning following diagnosis‚ through treatment‚ and in recovery.”

In the May 2001 issue of Health Psychology‚ Matthew Cordova‚ PhD‚ and associates compared PTG levels for 70 women following breast cancer and a control group of women without the disease. This study used the PTGI‚ in addition to measures of social support‚ depression‚ well–being‚ life change‚ communication‚ event impact‚ and traumatic stress. The women with breast cancer experienced more PTG than the control group‚ especially in the subscales that measured relating to others‚ spiritual change‚ and appreciation of life. Prior talk about cancer‚ longer times since diagnosis‚ and meeting the criteria for traumatic stressors were also associated with higher PTG scores.

Tzipi Weiss‚ DSW‚ assessed PTG in 41 women with breast cancer and their husbands by using the PTGI. Published earlier this year in the Journal of Psychosocial Oncology‚ her study also asked the husbands to validate their wives’ self–reported growth. Dr. Weiss’ research found that the women with breast cancer and their spouses experienced some level of PTG. The women experienced a level of growth similar to that reported by Dr. Cordova. Interestingly‚ the “appreciation of life” subscale from the PTGI showed highest growth by both women and men in the study.

“Personal strength” ranked second in growth for the women. For their husbands‚ “improved sense of relating to others” ranked second. Dr. Weiss found that‚ “wives’ and husbands’ reports of positive changes coexisted with their reports of significant negative changes‚” suggesting that couples share the potential for both the pain and gain associated with cancer. “Through my cancer experience‚ my relationship with my wife has grown immensely‚” explains Dart Winkler‚ a 27–year–old brain tumor survivor from Denver‚ Colorado. When Winkler was diagnosed in 1999‚ he and Heather Lafferty were dating.

Lafferty says that the cancer could easily have pushed two people apart. “But for Dart and me‚ it just clarified how we felt about each other. If we were going to get through it‚ we would do it together.” Both he and Lafferty spoke of their greater appreciation for life. At the time of his diagnosis‚ Winkler was entering his second year of law school. “Suddenly‚ law school was not the most important activity in my life‚” he recalls. “The diagnosis gave me tremendous perspective. I could see what was most important and became more focused on life.” Winkler and Lafferty agree that the ordeal has brought their respective families closer together‚ too‚ and has even affected their friends.

Transformation Through Trauma
Extreme life challenges have the potential to transform not just individuals‚ but also societies. Sandra L. Bloom‚ MD‚ in Posttraumatic Growth: Positive Changes in the Aftermath of Crisis‚ argues that throughout history‚ humans striving to transform adversity into strength consistently possess “a sense of moral commitment‚ a sense that personal and group trauma must be converted into a community asset‚ not just a personal asset or catastrophe. From such traumatic origins springs the co–construction or reconstruction of civilization.”

Individuals often use their life challenges as opportunities to create social transformation. In cancer advocacy‚ survivors and families have gone on to create many changes in the conduct of research and the delivery of healthcare.

In December of 1997‚ Sara Williams’ diagnosis of breast cancer at age 46 was a complete shock. Shortly after her treatment in a phase III clinical trial at the University of North Carolina Cancer Center in Chapel Hill‚ Williams left her job in international health and began helping others affected by breast cancer. As an information seeker‚ Williams describes herself as “an advocate waiting to happen.” In part from the outpouring of support she received during her cancer treatment‚ Williams concludes‚ “healing comes from helping other people.” She now serves as a breast cancer advocate for the NCI and is president of the Breast Cancer Coalition of North Carolina. She reviews state and federal research grant proposals and is also the recruitment coordinator for the Sister Study‚ a new research project funded by the National Institute of Environmental Health Sciences‚ that will evaluate genetic and environmental risk factors in breast cancer by monitoring 50‚000 sisters of women diagnosed with the disease. Williams says that her life is richer now‚ with “a greater vitality to everything around me.” And‚ she adds‚ “I don’t defer anything. I don’t wait around.”

Psychologists researching growth accompanying cancer agree that more PTG research is needed. Dr. Cordova and his colleagues note that research that has focused solely on detection of distress and its correlates may paint an incomplete and potentially misleading picture of adjustment to cancer. Dr. Weiss believes that future research will answer important questions about PTG‚ including the timing and length of growth‚ the correlation between PTG and type of cancer‚ gender‚ personality‚ and relationships‚ along with the association between PTG and levels of distress. PTG researchers agree that clinicians seeing cancer patients need to be mindful about the possibility of PTG.

However‚ as Dr. Weiss notes‚ “There is tremendous variability in the way people respond to cancer. There is no reason to impose an expectation of growth on yourself or anybody.”

With or without a cure‚ the presence of cancer may offer an opportunity for healing through personal growth. In the words of Dr. Weiss‚ “Trust the process.”