By: Andrea Tanguay, BSSW
Cancer was once a word that people were afraid to speak, and individuals rarely admitted to being a cancer survivor. The disease was often seen as a certain death sentence by those who were diagnosed.
Now, many cancer survivors openly discuss and share their cancer experiences. As a recent graduate with my bachelor’s in social work, I have kick started my career in the field of women’s oncology. In the time I have spent as an oncology social worker, I have learned the critical importance of continually responding to contexts that shape our practice. Because 65% of adults who are diagnosed with cancer will now be alive after at least five years, perceptions of cancer have begun to change. The view that cancer cannot be cured and the fears that have historically been attached to it are slowly changing. Because more and more people are surviving cancer, there is increased attention and focus on the quality of life and long-term outcomes of cancer survivors. Researchers are working to learn more about the challenges survivors face. Survivors have many unique needs that are not well understood. Some of these obstacles are medical, such as permanent side effects of treatment, the possibility of second cancers caused by treatment, and the need for long-term treatment and medical follow-up. Other challenges are emotional or social, like getting health insurance, discrimination by employers, relationship changes that may result from life-threatening illness, or learning to live with the possibility of cancer coming back.
To react to the emerging trends, we must first ask: Who is a cancer survivor? And what is survivorship?
The definition of a survivor is dynamic, and has been evolving with the current trends in cancer. The traditional definition of a cancer survivor requires that a patient be cancer free for at least five years. A more recent description considers someone a survivor after completing the first phase of treatment, such as chemotherapy, radiation, surgery, or a combination. The most current definition has progressed to consider a patient a survivor from the moment of diagnosis until death. This means that a patient becomes a survivor as soon as he or she is diagnosed with cancer, and remains a survivor through the phases of treatment and afterwards until the end of life. Today, the definition professionals use to describe a cancer survivor includes an individual who has been diagnosed with cancer, regardless of when that diagnosis was received, who is still living. Some patients do not feel comfortable calling themselves survivors, while others embrace the term. Each patient defines his or her own path, and navigates through the changes in his or her experiences.
Many cancer survivors I have encountered admit that while they felt they had a large amount of information and support during their illness, once treatment stopped, they entered a whole new world—one filled with new questions. The end of cancer treatment is often thought of as a time to rejoice. Patients are usually relieved to be ﬁnished with the demands of treatment and are ready to put the experience behind them. Yet at the same time, they may feel sad and anxious. It is common for a patient to be concerned about whether the cancer will come back and what they should do after treatment. When treatment ends, most people expect life to return to the way it was before the cancer diagnosis, but it can take time to recover. One of the hardest things after treatment is the unknown—the fear of what happens next.
Those who have gone through cancer treatment describe the end of treatment as a time of change. It is not so much “getting back to normal” as it is finding out what is normal for them now. People often say that life has new meaning or that they look at things differently now. Things may keep changing throughout recovery. The patient’s new “normal” may include making small or even drastic changes in everyday life. The shift to survivorship can be extremely challenging, and patients need support and assistance to make a successful transition. In some ways, moving from the period of “active treatment” into survivorship is one of the most complex aspects of the cancer experience, because it is different for every person.
Challenges Unique to Survivorship
Every survivor has individual concerns and challenges, but overall, there are some common experiences. Understanding and anticipating such challenges are important pieces for social workers and other professionals, so they can successfully assist patients in the transition. To successfully transition, patients need consistent and specific support from their doctors, nurses, social workers, and any other components of their professional support team. Patients can receive the much needed support during this adjustment period from survivorship services offered by professionals. That being said, there is an ever-growing need for cancer treatment centers to offer services specific for survivors and promote sustainable changes in the services available.
Survivors can face unique psychological challenges along the way. Fear of recurrence is very common among survivors, and minor physical problems can often trigger the feeling that the cancer has returned. For patients, knowing what is “normal” and what should be reported to a doctor can be difficult. Typically this fear lessens over time; however, certain events such as a diagnosis anniversary or follow-up exams can heighten anxiety. For some survivors, the feeling of uncertainty can become overwhelming and lead to struggles with depression and anxiety. They may also struggle with feelings of anger, isolation, guilt, and low self-esteem. Support groups and counseling can help survivors cope with these and other difficult emotions.
Treatment consists of specific physical problems and challenges, even after treatment. Different treatments cause different side effects, and patients may experience them in their own way. In particular, such side effects as fatigue, changes in skin texture, or nerve changes in the fingers or toes (also known as neuropathy) can take months to heal. Some side effects can even be permanent and require lifelong management. They can even show up months or years later, and these are known as late effects. Treatment can also exacerbate existing conditions, such as diabetes or heart disease. It is also common for some survivors to have a part of their body surgically altered or removed as a part of treatment. To cope with any side effects and maximize physical abilities, providers should offer a wide range of supportive care and rehabilitation services.
Coping with the lifelong challenges around sexual function and reproduction that remain long after the cancer is gone can bring about difficult emotions for patients. As a result of physical or emotional changes, patients may find it difficult to be intimate with someone. Treatment can also cause infertility in both men and women, and no longer being able to produce a child can bring about feelings of anger and grief. Giving patients all of their options regarding preservation of reproductive tissues, breasts, or genitals and effectively preparing them for any possible losses is critical for a successful transition into survivorship.
Cancer has an impact not only on the survivor but also on his or her relationships and support system. Patients can feel alone and isolated, and so become alienated from others. Cancer changes how people relate to one another; some people become closer, while others become much more distant. Families can become overprotective, or they can feel like they have exhausted their ability to be supportive. Support post-treatment can often be much different from what a patient hoped for or expected. In addition, relationship challenges that were put on hold during treatment can resurface. Offering counseling and similar services can assist a survivor in recognizing and working through these changes, and ensure they get the support they need.
Returning to work can be a sign of a patient regaining a sense of a “normal” routine and lifestyle, and most survivors need their employment to survive. Although survivors can be just as productive as they were prior to treatment, many often feel they are treated differently or unfairly and are fearful of asking for extra accommodations if needed. There is a lot of apprehension and embarrassment when survivors return to work and feel that coworkers may view them as less able. However, information is available to help patients transition back into the workforce, and there are laws and regulations that prohibit discrimination, such as the Americans with Disabilities Act. Key players in avoiding discrimination and advocating for the client include the employer’s human resources representative and an oncology social worker.
Financial challenges go hand in hand with returning or even not returning to work, as the cost of cancer can be exponentially high. Even patients who are fortunate enough to have health insurance are left with costs that accrue quickly. Often, survivors have already lost income because they were not able to work as much or at all during treatment, making it difficult to pay both medical and household bills. It is a critical part in the role of the oncology social worker or patient navigator to connect patients with national and local organizations that offer financial information, advice, and support.
Spirituality can be a critical part of coping and healing throughout the cancer experience. Many survivors struggle with questions of why they had cancer or why they survived. For some, spirituality and faith are sources of comfort and strength. Others may find themselves examining long-held beliefs or religious values as they try to make sense of their experience and find new meaning in life. There can often be a lot of anger and resentment, even a sense that they have been betrayed by their faith. Patients who did not have strong religious or spiritual beliefs beforehand may have new questions or be confused about what these issues mean to them now. Oncology social workers must be competent and comfortable addressing spiritual needs with patients and how they can find support through their beliefs
Development of treatment and support services for cancer survivors is a reasonably new and ongoing process. Many areas of potential research for cancer survivors exist, including the long-term effects on physical challenges; workplace, marital and relationship, and financial issues; and social aspects. The existing literature about lifestyle interventions for cancer survivors after completion of treatment is growing. Through the efforts of professionals such as doctors and social workers, cancer survivors’ special needs are being recognized and addressed. Through survivorship programs, survivors receive support in seeking ways to prevent a cancer recurrence, assistance in formulating questions to ask their healthcare providers, and ways to enhance the quality and length of their lives. The overall goal of cancer survivorship is to empower survivors and their families. This is a progressive area of opportunity for social workers and other professionals to provide and ensure quality care for patients.
Andrea Tanguay received her Bachelor of Science in Social Work from Salve Regina University in 2012. She is currently working as a Patient Navigator for the Program in Women’s Oncology at Women & Infants’ Hospital in Providence, RI.
This article appeared in THE NEW SOCIAL WORKER, Spring 2013, Vol. 20, No. 1. Copyright White Hat Communications. All rights reserved.