Cancer survivors
Encyclopedia
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." 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.
Many cancer survivors describe the process of living with and beating cancer as a life-changing experience. 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.
(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 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
. 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
.
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
, those who have not diagnosed with cancer
, but have a survived the predisposition, or higher risk, of cancer due to certain genetic mutations. 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.
Some survivors, even if the cancer has been permanently cured, struggle emotionally from the trauma of having experienced a life-threatening disease. Cancer survivors suffer from more psychological distress than those who have never experienced cancer (5.6% compared to 3.0%) Serious psychosocial distress was seen 40% more among cancer survivors of 5 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. Survivors of adult cancer are at an increased risk of suicidal ideology (having thoughts about suicide), while as many as 13% of childhood cancer survivors experience suicidal ideology. 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.
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. 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.
, 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.
Survivors of childhood cancer have a life expectancy
up to 28% shorter than people in the general population. 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. 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.
Cancer
Cancer , known medically as a malignant neoplasm, is a large group of different diseases, all involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body. The cancer may also spread to more distant parts of the...
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." 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.
Many cancer survivors describe the process of living with and beating cancer as a life-changing experience. 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.
Definitions and alternatives
The National Coalition for Cancer SurvivorshipNational Coalition for Cancer Survivorship
The National Coalition for Cancer Survivorship is a 501 nonprofit organization cancer advocacy organization based just outside of Washington, DC in Silver Spring, MD...
(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
National Cancer Institute
The National Cancer Institute is part of the National Institutes of Health , which is one of 11 agencies that are part of the U.S. Department of Health and Human Services. The NCI coordinates the U.S...
's Office of Cancer Survivorship uses a variant of this expanded definition while Macmillan Cancer Support
Macmillan Cancer Support
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer....
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 word survivor is a loaded term
Loaded language
In rhetoric, loaded language is wording that attempts to influence the certain audience by using to emotion....
. 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
Breast cancer
Breast cancer is cancer originating from breast tissue, most commonly from the inner lining of milk ducts or the lobules that supply the ducts with milk. Cancers originating from ducts are known as ductal carcinomas; those originating from lobules are known as lobular carcinomas...
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
Quality of life
The term quality of life is used to evaluate the general well-being of individuals and societies. The term is used in a wide range of contexts, including the fields of international development, healthcare, and politics. Quality of life should not be confused with the concept of standard of...
.
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
Genetic carrier
A genetic carrier , is a person or other organism that has inherited a genetic trait or mutation, but who does not display that trait or show symptoms of the disease. They are, however, able to pass the gene onto their offspring, who may then express the gene...
, those who have not diagnosed with cancer
Cancer
Cancer , known medically as a malignant neoplasm, is a large group of different diseases, all involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body. The cancer may also spread to more distant parts of the...
, but have a survived the predisposition, or higher risk, of cancer due to certain genetic mutations. 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
DNA
Deoxyribonucleic acid is a nucleic acid that contains the genetic instructions used in the development and functioning of all known living organisms . The DNA segments that carry this genetic information are called genes, but other DNA sequences have structural purposes, or are involved in...
testing, can make informed choices prior to cancer diagnosis. The typical previvor has tested positive for a BRCA mutation
BRCA mutation
A BRCA mutation is a mutation in either of the genes BRCA1 and BRCA2. Harmful mutations in these genes produce a hereditary breast-ovarian cancer syndrome in affected families...
and learned that she is at high risk for developing breast cancer
Breast cancer
Breast cancer is cancer originating from breast tissue, most commonly from the inner lining of milk ducts or the lobules that supply the ducts with milk. Cancers originating from ducts are known as ductal carcinomas; those originating from lobules are known as lobular carcinomas...
and ovarian cancer
Ovarian cancer
Ovarian cancer is a cancerous growth arising from the ovary. Symptoms are frequently very subtle early on and may include: bloating, pelvic pain, difficulty eating and frequent urination, and are easily confused with other illnesses....
, and is attempting to manage that risk through a combination of increased surveillance through mammograms, breast MRIs, pelvic ultrasounds, oophorectomy
Oophorectomy
Oophorectomy is the surgical removal of an ovary or ovaries. The surgery is also called ovariectomy, but this term has been traditionally used in basic science research describing the surgical removal of ovaries in laboratory animals...
, 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.
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.Psychosocial
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. 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. Cancer survivors suffer from more psychological distress than those who have never experienced cancer (5.6% compared to 3.0%) Serious psychosocial distress was seen 40% more among cancer survivors of 5 years or more than in those who have never had cancer. About 10% develop major depressive disorder; others experience an adjustment disorder
Adjustment disorder
Adjustment disorder is a psychological response to an identifiable stressor or group of stressors that cause significant emotional or behavioral symptoms that do not meet criteria for anxiety disorder, PTSD, or acute stress disorder...
. In young adult cancer survivors, one small study found that 20% of participants met the full clinical diagnosis of post-traumatic stress disorder
Post-traumatic stress disorder
Posttraumaticstress disorder is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma. This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's physical, sexual, or psychological integrity,...
(PTSD), and 45% to 95% displayed at least one symptom of PTSD. Survivors of adult cancer are at an increased risk of suicidal ideology (having thoughts about suicide), while as many as 13% of childhood cancer survivors experience suicidal ideology. 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
Symptom
A symptom is a departure from normal function or feeling which is noticed by a patient, indicating the presence of disease or abnormality...
indicates that the cancer has returned, with as many as 9 in 10 patients fearful that their cancer will recur.
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. 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
Superwoman (sociology)
In sociology the term superwoman has been used to describe a Western woman who works hard to manage multiple roles of a worker, a homemaker, a volunteer, a student etc...
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.
Physical
In terms of medical challenges, some survivors experience cancer-related fatigueCancer-related fatigue
Cancer-related fatigue is a subjective symptom of fatigue that is experienced by nearly all cancer patients.Among patients receiving cancer treatment other than surgery, it is essentially universal. Fatigue is a normal and expected side effect from most forms of chemotherapy, radiation therapy,...
, 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
Fertility
Fertility is the natural capability of producing offsprings. As a measure, "fertility rate" is the number of children born per couple, person or population. Fertility differs from fecundity, which is defined as the potential for reproduction...
.
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
Radiation therapy
Radiation therapy , radiation oncology, or radiotherapy , sometimes abbreviated to XRT or DXT, is the medical use of ionizing radiation, generally as part of cancer treatment to control malignant cells.Radiation therapy is commonly applied to the cancerous tumor because of its ability to control...
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.
Survivors of childhood cancer have a life expectancy
Life expectancy
Life expectancy is the expected number of years of life remaining at a given age. It is denoted by ex, which means the average number of subsequent years of life for someone now aged x, according to a particular mortality experience...
up to 28% shorter than people in the general population. Therefore, there is a need to closely monitor these patients for much longer than usual. The Children's Oncology Group
Children's Oncology Group
The Children’s Oncology Group , a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research...
recommends that monitoring should include periodic follow up and screening by a clinician familiar with these patients' risks. Improving these patients' longevity
Longevity
The word "longevity" is sometimes used as a synonym for "life expectancy" in demography or known as "long life", especially when it concerns someone or something lasting longer than expected ....
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
Breastfeeding
Breastfeeding is the feeding of an infant or young child with breast milk directly from female human breasts rather than from a baby bottle or other container. Babies have a sucking reflex that enables them to suck and swallow milk. It is recommended that mothers breastfeed for six months or...
and require more support to undertake this health-promoting activity. 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.
External links
- Information about survivorship at Cancer.Net by the American Society of Clinical OncologyAmerican Society of Clinical OncologyThe American Society of Clinical Oncology is the world's leading professional organization representing physicians of all oncology subspecialties who care for people with cancer. Founded in 1964 by Drs...
- National Coalition for Cancer Survivorship
- Cancer survivorship website, NHS Improvement
- Welcome to Cancerland, an essay criticizing the commercialization of survivorship by journalist and breast cancer survivor Barbara EhrenreichBarbara Ehrenreich-Early life:Ehrenreich was born Barbara Alexander to Isabelle Oxley and Ben Howes Alexander in Butte, Montana, which she describes as then being "a bustling, brawling, blue collar mining town."...
- Advice for survivors on disclosing their cancer diagnosis from Survivorship A-Z
- Words are inadequate by Dana JenningsDana JenningsDana Jennings is an American journalist, who is an editor at The New York Times, as well as an author...
, about the language of survivorship, victimhood, and battling cancer