A cancer survivor is a person with or beyond cancer of any type who is still living. Whether a person becomes a survivor at the time of diagnosis or after completing treatment, whether people who are actively dying are considered survivors, and whether healthy friends and family members of the cancer patient are also considered survivors, varies from group to group. Some people who have been diagnosed with cancer reject the term survivor or disagree with some definitions of it.
How many people are cancer survivors depends on the definition used. Nearly 65% of adults diagnosed with cancer in the developed world are expected to live at least five years after the cancer is discovered. In the U.S. for example, about 17 million Americans alive today—one in 20 people–are either currently undergoing treatment for cancer or have done so in the past (up from 11 million, or one in thirty people, in 2009). Globally, about 45 million people, mostly from wealthier countries, have survived cancer for at least five years.
For many people, surviving cancer can be highly traumatic and it is not uncommon for people to experience psychological distress such as post-traumatic stress-disorder or symptoms of post-traumatic-stress. Some cancer survivors describe the process of living with and beating cancer as a life-changing experience and some people who survive cancer may 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. This process of post-traumatic growth is called benefit finding. Cancer survivors often have specific medical and non-medical needs related to their cancer experience.
Definitions and alternatives Macmillan Cancer Support in the UK defines a cancer survivor as someone who is "living with or beyond cancer", namely someone who: has completed initial cancer management and has no apparent evidence of active disease; is living with progressive disease and may be receiving cancer treatment, but is not in the terminal phases of illness; or has had cancer in the past.
The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as being any person diagnosed with cancer, from the time of initial diagnosis until their death. This 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 "impacted by the survivorship experience" in any way. Part of the goal in promoting survivorship was to stop using the older, more discouraging label cancer victim.
The US National Cancer Institute's Office of Cancer Survivorship uses a definition that focuses on identifying people with a medical history that includes any form of cancer, regardless of their self-identification with the word survivor.
The word survivor is a loaded term. Using the blanket term to label a diverse group is problematic, and many former cancer patients reject the term. Within the breast cancer culture, survivorship is conferred upon women who are perceived as having had 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.
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. 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.
The term previvor has been used to describe unaffected carriers. Unaffected carriers, or previvors, are those who have not been diagnosed with cancer, but who know that they are likely to develop cancer due to certain genetic mutations that form a known cancer syndrome. They have survived the predisposition, or higher risk, of cancer. As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting into DNA testing, can make informed choices prior to cancer diagnosis. The typical previvor has tested positive for a BRCA mutation, learned that she is at high risk for developing breast cancer and ovarian cancer, or he is at high risk of developing prostate or male breast cancer, and is attempting to manage that risk through a combination of increased surveillance through mammograms, breast MRIs, pelvic ultrasounds, oophorectomy, bilateral mastectomy, PSA testing, MRI, and other medical procedures. There has been controversy over the term previvor, because the name compares these healthy women to people who have already been diagnosed with cancer.
Needs of cancer survivors People who have finished cancer treatment often have psychological and physical medical challenges. These effects can vary from person to person, change over time, and range in intensity from mild and intermittent to fully disabling. Different cancers and different treatments cause different long-term side effects. Problems commonly include fatigue, pain, sleep problems, physical side effects like lymphoedema, weight gain, anxiety and depression, fear of cancer recurrence, impacted sexual desire and or function, and impaired quality of life.
Psychosocial Returning to life If the treatment is lengthy and disruptive, many patients experience some difficulty in returning to normal daily life. 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. Some survivors become dependent on the attention and sympathy that they received during their treatment and feel neglected when life returns to normal. There are tremendous implications that cancer has on the relationships that survivors have with their loved ones (particularly their partners) once their cancer has been treated, and social support plays a critical role in their long-term emotional adjustment.
Cancer survivors tend to be more resilient than the general population.
Ongoing effects Some survivors have to adjust to the idea that they will never be cured.
Some survivors, even if the cancer has been permanently cured, struggle emotionally from the trauma of having experienced a life-threatening disease. Cancer survivors experience more psychological distress than those who have never had cancer (5.6% compared to 3.0%). Serious psychological distress was seen 40% more among cancer survivors of five years or more than in those who have never had cancer. About 10% develop major depressive disorder; others experience an adjustment disorder. 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. The NCCN has developed a distress thermometer scale for measuring overall distress in cancer survivors.
Survivors of adult cancer are at an increased risk of suicidal ideation (having thoughts about suicide), while as many as 13% of childhood cancer survivors experience suicidal ideation. Issues of pain and physical ailments have been hypothesized as major contributing factors in cancer survivors experiencing this suicidal ideation.
Fear of cancer recurrence People whose cancer is in remission may still have to cope with the uncertainty that at any time their cancer could return without warning. After the initial treatment has ended, anxiety is more common among cancer survivors than among other people. This anxiety regarding the cancer's return is referred to as fear of cancer recurrence. 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 or spread. In addition to the appearance of any new aches and pains, common triggers for a fear that the cancer may return include hearing that someone else has been diagnosed with cancer, annual medical exams to determine whether the cancer recurred, and news stories about cancer. This anxiety leads to more medical check ups, which can be measured even after a period of up to ten years. This fear can have a significant effect on individuals' lives, resulting in difficulties in their daily life such as work and socialising, and difficulties planning for the future. Overall, fear of cancer recurrence is related to a reduced quality of life in cancer survivors.
This fear is not unwarranted, as both pediatric and adult survivors have a higher than average risk of another cancer (a new cancer, sometimes called a second primary), in addition to the possibility that the original cancer could recur. These new cancers may have been caused by genetic predisposition, by the treatment for the first cancer, or by ordinary risk factors for cancer. Some risk factors, such as smoking, drinking alcohol, overeating, and lack of physical activity, may be things the cancer survivor can modify, with a consequent reduction in the chance of a second cancer.
While fear of cancer recurrence can be adaptive at low levels (e.g., by prompting the person to get appropriate screening tests done), high levels of fear require psychological treatment. , there are no psychometrically sound measures of this fear, which makes research into the effectiveness of treatment protocols difficult to interpret. Treatments that are being investigated include: cognitive-behavioural therapy, meta-cognitive therapy, cognitive-existential group therapy, mindfulness-based interventions, and physical exercise.
Financial effects Cancer survivors and their families have often incurred significant expenses or had to forego the opportunity to work regularly during treatment and recovery. When treatment ends, they may be partially or fully disabled, either temporarily or permanently. They may have ongoing costs, such as expensive medications to prevent recurrence or address side effects. As a result, they may experience financial distress. Adult survivors of childhood cancer are twice as likely to be unemployed than healthy controls. The risk of unemployment depends on cancer diagnosis, with survivors of CNS and brain tumors being nearly 5 times more likely to be unemployed, whereas the risk for survivors of blood or bone cancer was found to be elevated but not significantly higher.
Survivorship 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. As described by Gayle Sulik in her book Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health, the ideal survivor is bravely committed to mainstream medicine and optimistic or even certain of a physical cure. SheSulik was writing specifically about women survivors of breast cancer. is open about diagnosis and treatment and become 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.
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