A cancer survivor is an individual with cancer of any type, current or past, who is still living. About 11 million Americans alive today—one in 30 people–are either currently undergoing treatment for cancer or have done so in the past."[1] Currently nearly 65% of adults diagnosed with cancer in the developed world are expected to live at least five years after the cancer is discovered.[2]
Many cancer survivors describe the process of living with and beating cancer as a life-changing experience.[3] It is not uncommon for survivors to use the experience as opportunities for creative self-transformation into a "better person" or as motivation to meet goals of great personal importance, such as climbing a mountain or reconciling with an estranged family member.
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The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor. This expansive definition of "survivor" includes people who are dying from untreatable cancer. NCCS later expanded the definition of survivor even further to include family, friends and voluntary caregivers who are affected by the diagnosis in any way.
The National Cancer Institute's Office of Cancer Survivorship uses a variant of this expanded definition[4] while Macmillan Cancer Support defines a cancer survivor as someone who is "living with or beyond cancer", namely someone who:
The word survivor is a loaded term.[3] Within the breast cancer culture, survivorship is conferred upon women who are perceived as having suffered emotional or physical trauma, even if their breast cancer was a non-life-threatening pre-cancerous condition like LCIS or DCIS. The term tends to erase and degrade people who are dying of incurable cancer. This idea of survivorship emphasizes and values longevity of life after diagnosis, while overlooking issues of quality of life.[3]
Some people reject the term survivor as being a narrow conceptualization of highly variable human experiences. Alternatives include alivers and thrivers, which put emphasis on living as well as possible, despite limitations and disability.[3] A third term, the diers, is used by some terminally ill patients who reject the claim that dying is part of survivorship or should be covered up with inappropriately optimistic language.[3]
The term previvor has been used to describe unaffected carriers, those who have not diagnosed with cancer, but have a survived the predisposition, or higher risk, of cancer due to certain genetic mutations.[6][7] As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis. The typical previvor has tested positive for a BRCA mutation and learned that she is at high risk for developing breast cancer and ovarian cancer, and is attempting to manage that risk through a combination of increased surveillance through mammograms, breast MRIs, pelvic ultrasounds, oophorectomy, bilateral mastectomy, and other medical procedures. There has been much controversy over the term previvor, due to the fact that the name compares these healthy women to people have actually been diagnosed with invasive cancer.
People who have finished cancer treatment often have psychological and physical medical challenges.[8] These effects can vary from person to person, change over time, and range in intensity from mild and intermittent to fully disabling.
If the treatment is lengthy and disruptive, many patients experience some difficulty in returning to normal daily life.[9] The energy needed to cope with a rigorous treatment program may have caused them to disconnect from previous daily patterns, such as working, normal self-care, and housekeeping. A small number of patients become dependent on the attention and sympathy that they received during their treatment and feel neglected when life returns to normal.
Some survivors, even if the cancer has been permanently cured, struggle emotionally from the trauma of having experienced a life-threatening disease.[10] Cancer survivors suffer from more psychological distress than those who have never experienced cancer (5.6% compared to 3.0%)[11] Serious psychosocial distress was seen 40% more among cancer survivors of 5 years or more than in those who have never had cancer.[11] About 10% develop major depressive disorder; others experience an adjustment disorder.[10] In young adult cancer survivors, one small study found that 20% of participants met the full clinical diagnosis of post-traumatic stress disorder (PTSD), and 45% to 95% displayed at least one symptom of PTSD.[12] Survivors of adult cancer are at an increased risk of suicidal ideology (having thoughts about suicide),[13] while as many as 13% of childhood cancer survivors experience suicidal ideology.[14] Issues of pain and physical ailments have been hypothesized as major contributing factors in cancer survivors experiencing this suicidal ideology.
Other patients have to adjust to the idea that they will never be cured, or that the cancer could return without warning. Many patients are anxious that any minor symptom indicates that the cancer has returned, with as many as 9 in 10 patients fearful that their cancer will recur.[1]
The cultural ideal of a survivor may add to individual patients' distress if the patient is unable or unwilling to live up to the ideal.[3] The ideal survivor is bravely committed to mainstream medicine and optimistic or even certain of a physical cure. He or she is open about diagnosis and treatment and becomes an educated, empowered medical consumer. The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organizations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect.[3]
In terms of medical challenges, some survivors experience cancer-related fatigue, may have long-term side effects from cancer and its treatment, and may need extensive rehabilitation for mobility and function if aggressive surgery was required to remove the cancer. They may experience temporary or persistent chemo brain. Some young survivors lose their ability to have children.
Cancer survivors frequently need medical monitoring, and some treatments for unrelated diseases in the future may be contraindicated. For example, a patient who has had a significant amount of radiation therapy may not be a good candidate for more radiation treatments in the future. To assist with these needs, "survivor care plans" have been promoted. These are personalized documents that describe the person's diagnosis and treatment in detail, list common known side effects, and specifically outline the steps that the survivor should take in the future, ranging from maintaining a healthy weight to receiving specific medical tests on a stated schedule.[15]
Survivors of childhood cancer have a life expectancy up to 28% shorter than people in the general population.[16] Therefore, there is a need to closely monitor these patients for much longer than usual. The Children's Oncology Group recommends that monitoring should include periodic follow up and screening by a clinician familiar with these patients' risks. Improving these patients' longevity requires recognition and treatment of illnesses associated with late effects in the decades after therapy for childhood cancer. For example, survivors of childhood cancer may have more difficulty than typical with breastfeeding and require more support to undertake this health-promoting activity.[17] Others experience various forms of heart disease. One challenge to achieving this goal is that childhood cancer survivors are both very adaptable and accustomed to denying difficulties; as a result, they tend to minimize their symptoms. Therefore, internists may not give them all the attention they need and thus the actual help they may need. Symptom management, health promotion, specific attention to psychosocial needs, and surveillance for recurrence and specific late effects of treatment are helpful.[16]