What few of us realize is that for a person who has had cancer, life changes forever and the repercussions of cancer last a lifetime. This is partly due to direct results of the disease or treatment, but more importantly, due to a shift in perspective and revised identity, as a person is transformed into a new being.
Just like cancer is made up of many diseases, people are made up of many identities or roles. In psychology, “sense of self” is used to describe the way in which you see yourself as a result of life experiences. When entering the cancer experience as a relatively healthy adult, significant aspects or the sense of self has already been established. The sense of self or perceived role may be that of a husband, wife, friend, child, parent, employee, scientist, artist, or mathematician, just to mention a few of the many options people have in today’s world. We are all conglomerates of human experience and have many facets to our personalities. We are made up of numerous and distinct abilities. This becomes important when faced with a life changing event such as cancer.
In the instance of hearing a cancer diagnosis, one’s sense of self adopts vulnerability, dependency, fear and loss. As much as you would like to continue being the person you have been, you cannot. That life is altered. Trying to maintain the previous level of attention to all former roles is both ineffective and frustrating. It’s time to regroup. It is disorienting, with all the medical information, the need to make decisions about your life and the new role of “patient”. Depending on your supportive resources, it can be a time of upset and disorganization. It can deplete your energy and emotions very quickly.
When a woman is diagnosed with breast cancer, common themes emerge in varying degrees of intensity. Relationships are of great importance. Initially, concern is expressed regarding eminent death due to cancer, regardless of prognosis. Thoughts of what will happen to remaining family, especially children, become a focus. Because of the advances made in breast cancer treatment, most women recover and live a productive and fulfilling life, but being faced with a potentially fatal condition strips the sense of security of health. Many women state that their bodies have betrayed them. They are horrified to find that maintaining a healthy weight, exercising, positively managing stress and eating balanced nutrition is no guarantee of health. Trust in continued health can be difficult to establish. In fact, one of the functions of uneventful recovery is to prove that health can be attainable.
Women are relational beings and are conscious of how they fit into society. One basic role is femininity. Breast cancer is a disease of a body part that is glorified in the media and a focus of physical maturation. When a breast is removed or otherwise distorted, women often find it hard to feel feminine. Many breast cancers are affected by estrogen and require anti-estrogen treatment and/or removal of the ovaries. Some of these treatments may produce an instant menopause, which in turn affects mood, skin, nails, hair, energy levels, pain and sexuality. Chemotherapy can affect memory, problem solving skills, hair loss and physical touch perception. Women who base their sense of self on physical attributes and functioning can feel empty and without purpose. Many things which defined them as a person are permanently altered.
Sexual difficulties were reported in 75% of women after breast cancer treatment in a 2009 clinical study by Goldfarb et al. at Memorial Sloan Kettering Cancer Center. Cancer treatment can result in dryness and thinning of vaginal tissue causing pain with intercourse. Concerns about fertility are paramount in young women who desire children after cancer. Discussions with oncology specialists about these issues are part of good survivorship care and referrals can be made to a specialist and some effective remedies can be over the counter.
Body image is tied closely with feeling feminine and to sexuality. Appearing normal in clothing is usually a reliable outcome of reconstruction. Reconstruction may be pronounced a success by the plastic surgeon, but can be experienced by a woman as simply a breast mound and not a real breast. Numbness in the breast or arm will affect perception of touch. Lymphedema, or swelling of an arm and/or hand, can create self consciousness as well as increasing the risk for infection and make finding comfortable clothing difficult. Feeling normal must come from a way of thinking, not a physical condition.
Women often have a difficult time asking for help due to their experience with family organization, paternalism, and self sufficiency in many tasks. Common needs such as physical touch, expressing feelings with others honestly without judgment, and being understood, at a time when they do not understand themselves, may go unaddressed. Self esteem can weaken without this reinforcement and passivity can result. Clinical studies have suggested that breast cancer survivors who have support have a better quality of life during treatment and recovery.
Emotional states change as treatment progresses and recovery begins. Undiagnosed mental illness can flare under the stress of breast cancer. Long standing mental illness requires closer management for stable outcomes. Women may state a sense of losing control and the fear of the unknown can be crippling. Feeling abandoned after active treatment is completed is also common. Spiritual crises occur when a person questions the purpose of cancer in their lives and why God would allow this to happen to them. Searching for meaning in one’s life experience will rearrange the basic perception of personal identity.
Pain, insomnia, osteoporosis, cardiac effects, lowered energy and stamina all change the way a person with breast cancer views herself. The recent use of survivorship care plans can reduce the anxiety of the future and those who are using them in clinical practice find that there is a clear benefit in written care plans. The care plan is an accurate record of the diagnosis and treatment and a plan for follow up care. It also includes the names and contact information for all cancer care providers. Providing clarity about the experience and the future gives any cancer patient a starting place for redesigning her role in life and making a comfortable and meaningful sense of who she is now as a survivor.
After diagnosis, remaining life is spent in fluid recovery. This is a vulnerable, tender time of self examination, longing for what was and building what is to be. It is a n opportunity for positive change. Providers can help patients in this change by empowering them to be an active part in their cancer care and guiding them in the things they can do for themselves to support their new lives. Caregivers can improve lives by being available and willing to listen with positive regard, problem solving tips and encouragement in every step of this new life.
Written by Sue Bowman, RN, BS, OCN, CBCN, MSW
York Cancer Center
Are you recovering after cancer treatment? Please tell us about your experience with regaining identity and "sense of self," in a comment below.
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