Americans afflicted with cancer are living longer, and the outlook for them continues to improve. On the strength of public awareness, early detection, and improved multimodal cancer treatment, cancer has evolved for many patients from an often fatal disease to a chronic, treatable condition. Cancer survivors have increased in number by more than threefold over the past 30 years. Today, there are more than 11 million survivors in the United States, with the expectation that this number will double over the next 30 years.1 Among patients diagnosed today, nearly two thirds are expected to survive at least 5 years.2 Many of these survivors will live 10, 15, 20, or more years after a cancer diagnosis.
The central tenet of cancer rehabilitation is to help cancer patients and survivors regain and improve their physical, psychosocial, and vocational functioning within the limitations imposed by the disease and its treatment.3 Cancer survivors may be disease-free, but not “free of their disease.” They may face a vast scope of issues, including, but not limited to, fatigue, pain, lymphedema, anxiety, and functional impairments as a result of their cancer or its treatment (Table 1). Therefore, for many cancer patients, returning to “normal” life can be a very difficult transition.
In 2005, the Institute of Medicine published a report, From Cancer Patient to Cancer Survivor: Lost in Transition, which began to address the increasingly important role that rehabilitation plays in the lives of cancer survivors.4 The interdisciplinary survivorship committee at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center has worked over the past year to develop a variety of programs to address some of the physical, cognitive, and psychosocial concerns experienced by our cancer survivors. This article highlights a few of these programs.
Expressions of Hope & Healing
Cancer patients who have completed medical treatment often have unresolved psychological issues. Not only do people with cancer experience an increase in negative emotions, such as anxiety and depression, but they also experience a lack of positive emotions.5 Art programs have been shown to help
integrate their difficult experience into their new identities.6 Whereas support groups can be extremely powerful and helpful for some cancer patients, we have found that many survivors are better able to express and find meaning in their experiences through art rather than through words. Expressions of Hope & Healing, an art healing workshop, was created to use art as an expressive tool to guide cancer patients through their healing process and help them find meaning in their experience.
In his seminal book published in 1949, The Hero with a Thousand Faces, Joseph Campbell identified the underlying pattern in virtually all myths, stories, and spiritual traditions—the Hero’s Journey.7 Campbell lays out a number of stages along every Hero’s Journey, including the “call to adventure,” “the ordeal,” “the road back,” and “return with the elixir.” Led by Flori Hendron, herself a cancer survivor, Expressions of Hope & Healing is an 8-week program that guides the cancer survivor through a journey that mirrors that of the prototypical hero. Based on primarily qualitative data that we have collected thus far, we have found that the program can increase self-esteem through engagement in the creative process, decrease a sense of isolation given the communal nature of the class, and improve coping skills by decreasing stress levels. More systematic and rigorous research is planned to better quantify the potential benefits and mechanisms of action that produce a benefit of art programs for patients with cancer.
Qigong program
Cancer and its treatment are associated with considerable distress, impaired quality of life, poor mental health, and reduced physical function.8 It is important to integrate programs that may mitigate the wide scope of the treatment-related effects of cancer and improve quality of life. Moreover, given the demands of many multimodal treatment schedules, these programs work best when integrated into the cancer patient’s schedule and regimen.
Qigong (pronounced Chee-Gung) is a form of traditional Chinese mind-body exercise and meditation that uses slow and precise body movements with controlled breathing and mental focusing. The goal is to improve balance, flexibility, muscle strength, and overall wellbeing. A recent randomized trial investigating the effects of qigong on quality of life, fatigue, and mood found significant improvements among cancer patients.9
Qigong has many practical advantages for program development at a cancer center. It is a viable practice for cancer patients with a wide spectrum of functional capacity and requires very little in the way of equipment or space. At Cedars-Sinai, the class is held outdoors on the plaza level of the hospital. The program was put together as a collaborative effort with the local Wellness Community. The practice sessions take about 75 to 90 minutes, depending on how the participants wish to proceed on any given day. The break between the sets of exercises is referred to as “social oncology” in China; it is when the participants talk to each other, share stories, and relate experiences with each other. The knitting together of classmates into a supportive group may be as therapeutic as any other part of the practice.
Emerging from the Haze
Cancer treatments are aggressive and often include surgery, radiation, chemotherapy, and immunotherapy. Improved survival rates are often attributed to these multimodal strategies; unfortunately, most are not highly specific and may place normal cells and organs at risk, including the central nervous system. Moreover, many of the adjunctive medications that cancer patients receive, such as corticosteroids, anti-epileptic medications, immunosuppressive agents, opioids, hypnotics, and antiemetics, may also contribute to impaired cognition.Therefore, cognitive dysfunction may be a consequence of the cancer, its treatment, or both.
The term chemobrain was coined after breast cancer patients started to notice mental fogginess around the same time they were being treated with chemotherapy. This term has its limitations because many other causes may contribute to cognitive dysfunction among cancer patients, such as depression, hormonal changes, insomnia, and even the cancer itself.10 Nevertheless, the term chemobrain has increasingly become more publicized, particularly among the breast cancer community.11 Although chemobrain was first identified and named by breast cancer survivors, the same constellation of symptoms also affects other cancer patients. A typical patient with chemobrain may report some or all of the concerns listed in Table 2.
Chemobrain has been reported to affect up to 75% of cancer patients and is often quite distressful.12 Symptoms persist in 17% to 34% of patients well after treatment has ended.13 Research on treatment options for cancer-related cognitive changes is still in its infancy. Proposed interventions include various cognitive-behavioral strategies and pharmacologic options, with medications such as methylphenidate and modafinil. These interventions are still undergoing clinical testing and, therefore, should be considered on a case-by-case basis.
At Cedars-Sinai Medical Center, we have begun a 6-week psychoeducational series to provide strategies in coping with the symptoms of chemobrain. After carefully screening participants for potentially reversible medical contributors to cognitive dysfunction and neuropsychological testing to identify any objective cognitive impairment, patients may enroll in this program, called Emerging from the Haze. In collaboration with our neuropsychology service, the series provides tools to cope with the common issues that cancer survivors face that are believed to affect cognition. Topics addressed in the program include:
We are gathering quality-of-life data to measure the benefit of this program. Based on initial impressions, the program appears promising.
Conclusions
As part of the cancer center’s commitment to treating the whole patient, not just the disease, the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center has worked to develop programs with the goal of helping cancer survivors live their lives to the fullest. Rehabilitation is an active process. Whereas chemo therapy, surgery, and radiation are often passive interventions from the perspective of the patient, exercise programs, psychoeducational series, and expressive arts programs are rehabilitation programs that require engagement and responsibility on the patient’s part. Achieving the capacity to meet the complex rehabilitation needs of a growing population of cancer survivors and identifying the most cost-effective and beneficial programs represents a major challenge and an opportunity for the oncology rehabilitation community.
References
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