![Cancer Survivors Park-2](https://upload.wikimedia.org/wikipedia/commons/d/de/Cancer_Survivors_Park-2.jpg)
A cancer survivor is a person with
cancer
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
of any type who is still living. Whether a person becomes a survivor at the time of
diagnosis
Diagnosis is the identification of the nature and cause of a certain phenomenon. Diagnosis is used in many different disciplines, with variations in the use of logic, analytics, and experience, to determine " cause and effect". In systems engin ...
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 11 million Americans alive today—one in 30 people–are either currently undergoing treatment for cancer or have done so in the past.
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. This process of posttraumatic 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
Macmillan Cancer Support is one of the largest British charities and provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, a ...
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
The National Coalition for Cancer Survivorship (NCCS) is a 501(c)(3) nonprofit organization cancer advocacy organization based in Silver Spring, Maryland. It is the oldest survivor-led cancer advocacy organization in the country, and works to e ...
(NCCS) pioneered the definition of survivor as being any person diagnosed with cancer, from the time of initial diagnosis until his or her 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.
The US
National Cancer Institute
The National Cancer Institute (NCI) coordinates the United States National Cancer Program and is part of the National Institutes of Health (NIH), which is one of eleven agencies that are part of the U.S. Department of Health and Human Services. ...
's Office of Cancer Survivorship uses a variant of this expanded definition.
The word ''survivor'' is a
loaded term
Loaded language (also known as loaded terms, emotive language, high-inference language and language-persuasive techniques) is rhetoric used to influence an audience by using words and phrases with strong connotations. This type of language is ve ...
.
Within the
breast cancer culture, survivorship is conferred upon women and men who are perceived as having had
emotional
Emotions are mental states brought on by neurophysiological changes, variously associated with thoughts, feelings, behavioral responses, and a degree of pleasure or displeasure. There is currently no scientific consensus on a definition. E ...
or
physical trauma
An injury is any physiological damage to living tissue caused by immediate physical stress. An injury can occur intentionally or unintentionally and may be caused by blunt trauma, penetrating trauma, burning, toxic exposure, asphyxiation, ...
, even if their
breast cancer
Breast cancer is cancer that develops from breast tissue. Signs of breast cancer may include a lump in the breast, a change in breast shape, dimpling of the skin, milk rejection, fluid coming from the nipple, a newly inverted nipple, or a re ...
was a non-life-threatening pre-cancerous condition like
LCIS
Lobular carcinoma ''in situ'' (LCIS) is an incidental microscopic finding with characteristic cellular morphology and multifocal tissue patterns. The condition is a laboratory diagnosis and refers to unusual cells in the lobules of the breast. Th ...
or
DCIS. The term tends to erase and degrade people who are dying of incurable cancer. This idea of survivorship emphasizes and values
longevity
The word " longevity" is sometimes used as a synonym for "life expectancy" in demography. However, the term ''longevity'' is sometimes meant to refer only to especially long-lived members of a population, whereas ''life expectancy'' is always d ...
of life after diagnosis, while overlooking issues of
quality of life
Quality of life (QOL) is defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards ...
.
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
Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be Cognitive disability, cognitive, Developmental disability, dev ...
.
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
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
, but who know that they are likely to develop cancer due to certain
genetic mutation
In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA or viral replication, mitos ...
s that form a known
cancer syndrome
A cancer syndrome, or family cancer syndrome, is a genetic disorder in which inherited genetic mutations in one or more genes predispose the affected individuals to the development of cancers and may also cause the early onset of these cancers. Ca ...
. 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
A ''BRCA'' mutation is a mutation in either of the ''BRCA1'' and ''BRCA2'' genes, which are tumour suppressor genes. Hundreds of different types of mutations in these genes have been identified, some of which have been determined to be harmful, ...
, learned that she is at high risk for developing
breast cancer
Breast cancer is cancer that develops from breast tissue. Signs of breast cancer may include a lump in the breast, a change in breast shape, dimpling of the skin, milk rejection, fluid coming from the nipple, a newly inverted nipple, or a re ...
and
ovarian cancer
Ovarian cancer is a cancerous tumor of an ovary. It may originate from the ovary itself or more commonly from communicating nearby structures such as fallopian tubes or the inner lining of the abdomen. The ovary is made up of three different c ...
, and is attempting to manage that risk through a combination of increased surveillance through mammograms, breast MRIs,
pelvic ultrasound
Medical ultrasound includes diagnostic techniques (mainly imaging techniques) using ultrasound, as well as therapeutic applications of ultrasound. In diagnosis, it is used to create an image of internal body structures such as tendons, musc ...
s,
oophorectomy
Oophorectomy (; from Greek , , 'egg-bearing' and , , 'a cutting out of'), historically also called ''ovariotomy'' is the surgical removal of an ovary or ovaries. The surgery is also called ovariectomy, but this term is mostly used in reference to ...
,
bilateral mastectomy
Mastectomy is the medical term for the surgical removal of one or both breasts, partially or completely. A mastectomy is usually carried out to treat breast cancer. In some cases, women believed to be at high risk of breast cancer have the operat ...
, 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 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
Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be cognitive, developmental, intellectual, mental, physical, ...
. They commonly include
fatigue
Fatigue describes a state of tiredness that does not resolve with rest or sleep. In general usage, fatigue is synonymous with extreme tiredness or exhaustion that normally follows prolonged physical or mental activity. When it does not resolve ...
,
pain
Pain is a distressing feeling often caused by intense or damaging stimuli. The International Association for the Study of Pain defines pain as "an unpleasant sensory and emotional experience associated with, or resembling that associated with, ...
,
sleep problems
A sleep disorder, or somnipathy, is a medical disorder of an individual's sleep patterns. Some sleep disorders are severe enough to interfere with normal physical, mental, social and emotional functioning. Polysomnography and actigraphy are tests ...
,
physical side effects like
lymphoedema
Lymphedema, also known as lymphoedema and lymphatic edema, is a condition of localized swelling caused by a compromised lymphatic system. The lymphatic system functions as a critical portion of the body's immune system and returns interstitial f ...
,
weight gain,
anxiety
Anxiety is an emotion which is characterized by an unpleasant state of inner turmoil and includes feelings of dread over anticipated events. Anxiety is different than fear in that the former is defined as the anticipation of a future threat wh ...
and
depression,
fear of
cancer recurrence
In internal medicine, relapse or recidivism is a recurrence of a past (typically medical) condition. For example, multiple sclerosis and malaria often exhibit peaks of activity and sometimes very long periods of dormancy, followed by relapse or ...
,
and impaired
quality of life
Quality of life (QOL) is defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards ...
.
Psychosocial
Returning to life
If the treatment is lengthy and disruptive, many patients experience some difficulty in returning to normal
daily life
Everyday life, daily life or routine life comprises the ways in which people typically act, think, and feel on a daily basis. Everyday life may be described as mundane, routine, natural, habitual, or Normality (behavior), normal.
Human diur ...
.
The energy needed to cope with a rigorous treatment program may have caused them to disconnect from previous daily patterns, such as
working
Working may refer to:
* Work (human activity), intentional activity people perform to support themselves, others, or the community
Arts and media
* Working (musical), ''Working'' (musical), a 1978 musical
* Working (TV series), ''Working'' (TV s ...
, normal
self-care
Self-care has been defined as the process of establishing behaviors to ensure holistic well-being of oneself, to promote health, and to actively management of illness when it occurs. Individuals engage in some form of self-care daily with food ...
, and
housekeeping
Housekeeping is the management and routine support activities of running an organised physical institution occupied or used by people, like a house, ship, hospital or factory, such as tidying, cleaning, cooking, routine maintenance, shopping, ...
. Some survivors become dependent on the
attention
Attention is the behavioral and cognitive process of selectively concentrating on a discrete aspect of information, whether considered subjective or objective, while ignoring other perceivable information. William James (1890) wrote that "Atte ...
and
sympathy
Sympathy is the perception of, understanding of, and reaction to the distress or need of another life form. According to David Hume, this sympathetic concern is driven by a switch in viewpoint from a personal perspective to the perspective of ano ...
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
Social support is the perception and actuality that one is cared for, has assistance available from other people, and most popularly, that one is part of a supportive social network. These supportive resources can be emotional (e.g., nurturance), ...
plays a critical role in their long-term
emotional adjustment.
Cancer survivors tend to be more
resilient
Resilience, resilient, resiliency, or ''variation'', may refer to:
Science
Ecology
* Ecological resilience, the capacity of an ecosystem to recover from perturbations
** Climate resilience, the ability of systems to recover from climate change
* ...
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
Mental distress or psychological distress encompasses the symptoms and experiences of a person's internal life that are commonly held to be troubling, confusing or out of the ordinary. Mental distress can potentially lead to a change of behavior, a ...
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
Major depressive disorder (MDD), also known as clinical depression, is a mental disorder characterized by at least two weeks of pervasive low mood, low self-esteem, and loss of interest or pleasure in normally enjoyable activities. Introdu ...
; others experience an
adjustment disorder
Adjustment disorder is a maladaptive response to a psychosocial stressor. It is classified as a mental disorder. The maladaptive response usually involves otherwise normal emotional and behavioral reactions that manifest more intensely than usual ...
.
In
young adult
A young adult is generally a person in the years following adolescence. Definitions and opinions on what qualifies as a young adult vary, with works such as Erik Erikson's stages of human development significantly influencing the definition of ...
cancer survivors, one small study found that 20% of participants met the full clinical diagnosis of
post-traumatic stress disorder
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on ...
(PTSD), and 45% to 95% displayed at least one symptom of PTSD.
Survivors of adult cancer are at an increased risk of
suicidal ideation
Suicidal ideation, or suicidal thoughts, means having thoughts, ideas, or ruminations about the possibility of ending one's own life.World Health Organization, ''ICD-11 for Mortality and Morbidity Statistics'', ver. 09/2020MB26.A Suicidal ideatio ...
(having thoughts about suicide),
while as many as 13% of
childhood cancer
Childhood cancer is cancer in a child. About 80% of childhood cancer cases can be successfully treated thanks to modern medical treatments and optimal patient care. However, only about 10% of children diagnosed with cancer reside in high-income cou ...
survivors experience suicidal ideation.
Issues of
pain
Pain is a distressing feeling often caused by intense or damaging stimuli. The International Association for the Study of Pain defines pain as "an unpleasant sensory and emotional experience associated with, or resembling that associated with, ...
and physical ailments have been hypothesized as major contributing factors in cancer survivors experiencing this suicidal ideation.
Fear of cancer recurrence
Patients 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
Anxiety is an emotion which is characterized by an unpleasant state of inner turmoil and includes feelings of dread over anticipated events. Anxiety is different than fear in that the former is defined as the anticipation of a future threat wh ...
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
In internal medicine, relapse or recidivism is a recurrence of a past (typically medical) condition. For example, multiple sclerosis and malaria often exhibit peaks of activity and sometimes very long periods of dormancy, followed by relapse or ...
. Many patients are anxious that any minor
symptom
Signs and symptoms are the observed or detectable signs, and experienced symptoms of an illness, injury, or condition. A sign for example may be a higher or lower temperature than normal, raised or lowered blood pressure or an abnormality showin ...
indicates that the cancer has returned, with as many as 9 in 10 patients fearful that their cancer will recur or
spread
Spread may refer to:
Places
* Spread, West Virginia
Arts, entertainment, and media
* ''Spread'' (film), a 2009 film.
* ''$pread'', a quarterly magazine by and for sex workers
* "Spread", a song by OutKast from their 2003 album ''Speakerboxxx/T ...
.
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
In sociology, socialization or socialisation (see spelling differences) is the process of internalizing the norms and ideologies of society. Socialization encompasses both learning and teaching and is thus "the means by which social and cultur ...
, and difficulties planning for the future.
Overall, fear of cancer recurrence is related to a reduced quality of life in cancer survivors.
While Fear of Cancer Recurrence (FCR) can be
adaptive
Adaptation, in biology, is the process or trait by which organisms or population better match their environment
Adaptation may also refer to:
Arts
* Adaptation (arts), a transfer of a work of art from one medium to another
** Film adaptation, a ...
at low levels, high levels of FCR require psychological treatment. At present, there are no
psychometrically sound measures of FCR, which makes research into the effectiveness of treatment protocols difficult to interpret. Treatments that are being investigated include:
cognitive-behavioural therapy
Cognitive behavioral therapy (CBT) is a psycho-social intervention that aims to reduce symptoms of various mental health conditions, primarily depression and anxiety disorders. CBT focuses on challenging and changing cognitive distortions (suc ...
,
meta-cognitive therapy, cognitive-existential group therapy,
mindfulness-based interventions, and
physical exercise
Exercise is a body activity that enhances or maintains physical fitness and overall health and wellness.
It is performed for various reasons, to aid growth and improve strength, develop muscles and the cardiovascular system, hone athletic ...
.
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
Medicine is the science and Praxis (process), practice of caring for a patient, managing the diagnosis, prognosis, Preventive medicine, prevention, therapy, treatment, Palliative care, palliation of their injury or disease, and Health promotion ...
and
optimistic
Optimism is an attitude reflecting a belief or hope that the outcome of some specific endeavor, or outcomes in general, will be positive, favorable, and desirable. A common idiom used to illustrate optimism versus pessimism is a glass filled ...
or even certain of a physical cure. She
[Sulik 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
Superwoman is the name of several fictional characters from DC Comics. Most of them are, like Supergirl, women with powers similar to those of Superman, like flight, invulnerability, and enhanced strength. Detective Comics, Inc. trademarked the ...
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
Social status is the level of social value a person is considered to possess. More specifically, it refers to the relative level of respect, honour, assumed competence, and deference accorded to people, groups, and organizations in a society. Stat ...
and
respect
Respect, also called esteem, is a positive feeling or action shown towards someone or something considered important or held in high esteem or regard. It conveys a sense of admiration for good or valuable qualities. It is also the process of ...
.
Physical
In terms of medical challenges, some survivors experience
cancer-related fatigue
Cancer-related fatigue is a 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 of most form ...
, may have long-term side effects from cancer and its treatment, and may need extensive
rehabilitation
Rehabilitation or Rehab may refer to:
Health
* Rehabilitation (neuropsychology), therapy to regain or improve neurocognitive function that has been lost or diminished
* Rehabilitation (wildlife), treatment of injured wildlife so they can be retur ...
for
mobility
Mobility may refer to:
Social sciences and humanities
* Economic mobility, ability of individuals or families to improve their economic status
* Geographic mobility, the measure of how populations and goods move over time
* Mobilities, a contemp ...
and function if aggressive
surgery
Surgery ''cheirourgikē'' (composed of χείρ, "hand", and ἔργον, "work"), via la, chirurgiae, meaning "hand work". is a medical specialty that uses operative manual and instrumental techniques on a person to investigate or treat a pat ...
was required to remove the cancer. They may experience temporary or persistent
post-chemotherapy cognitive impairment
Post-chemotherapy cognitive impairment (PCCI) (also known in the scientific community as "CRCIs or Chemotherapy-Related Cognitive Impairments" and in lay terms as chemotherapy-induced cognitive dysfunction or impairment, chemo brain, or chemo fog) ...
. 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
Radiation therapy or radiotherapy, often abbreviated RT, RTx, or XRT, is a therapy using ionizing radiation, generally provided as part of cancer treatment to control or kill malignant cells and normally delivered by a linear accelerator. Radia ...
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.
Medical tests to determine whether the cancer has returned commonly provoke fears. Informally, this is called ''scanxiety'', a portmanteau of ''scan'' and ''anxiety''. A desire to avoid feeling this fear can prompt survivors to postpone or refuse tests. This may be able to be helped by the follow up of people who have had cancer post-treatment being undertaken via self-reported patient-related
outcome measures rather than follow-up visits, but there is not enough controlled research looking into this.
Survivors of childhood cancer have a
life expectancy
Life expectancy is a statistical measure of the average time an organism is expected to live, based on the year of its birth, current age, and other demographic factors like sex. The most commonly used measure is life expectancy at birth ...
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
The Children's Oncology Group (COG), a clinical trials group supported by the National Cancer Institute (NCI), is the world's largest organization devoted exclusively to pediatric cancer research. The COG conducts a spectrum of clinical research a ...
recommends that monitoring should include periodic follow up and screening by a clinician familiar with these patients' risks. Improving these patients'
longevity
The word " longevity" is sometimes used as a synonym for "life expectancy" in demography. However, the term ''longevity'' is sometimes meant to refer only to especially long-lived members of a population, whereas ''life expectancy'' is always d ...
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, or nursing, is the process by which human breast milk is fed to a child. Breast milk may be from the breast, or may be expressed by hand or pumped and fed to the infant. The World Health Organization (WHO) recommends that br ...
and require more support to undertake this health-promoting activity. Childhood cancer survivors are also at risk for developing
kidney diseases
Kidney disease, or renal disease, technically referred to as nephropathy, is damage to or disease of a kidney. Nephritis is an inflammatory kidney disease and has several types according to the location of the inflammation. Inflammation can b ...
. Others experience various forms of
heart disease
Cardiovascular disease (CVD) is a class of diseases that involve the heart or blood vessels. CVD includes coronary artery diseases (CAD) such as angina and myocardial infarction (commonly known as a heart attack). Other CVDs include stroke, hea ...
. 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
Signs and symptoms are the observed or detectable signs, and experienced symptoms of an disease, illness, injury, or condition. A sign for example may be a higher or lower temperature than normal, raised or lowered blood pressure or an abnormali ...
. Therefore,
internists may not give them all the attention they need and thus the actual help they may need. Symptom management,
health promotion
Health promotion is, as stated in the 1986 World Health Organization (WHO) Ottawa Charter for Health Promotion, the "process of enabling people to increase control over, and to improve their health."
Scope
The WHO's 1986 Ottawa Charter for Healt ...
, specific attention to psychosocial needs, and surveillance for recurrence and specific late effects of treatment are helpful.
Health behaviour interventions may be able to reduce the impact of some of the chronic issues cancer survivors face by improving their dietary intake. Likewise, physical exercise training interventions may have positive effects on physical fitness, including
cardio-respiratory fitness,
muscle strength
Skeletal muscles (commonly referred to as muscles) are Organ (biology), organs of the vertebrate muscular system and typically are attached by tendons to bones of a skeleton. The muscle cells of skeletal muscles are much longer than in the other ...
and health-related quality of life.
Adolescent and young adult survivors
Adolescent and young adult (AYA) survivors, often defined as being between the ages of 15 and 39, have seen advancements in technology and modern medicine causing a dramatic increase in the number of AYA survivors. Prior to 1970,
childhood cancer
Childhood cancer is cancer in a child. About 80% of childhood cancer cases can be successfully treated thanks to modern medical treatments and optimal patient care. However, only about 10% of children diagnosed with cancer reside in high-income cou ...
was considered a universally fatal disease. From 1995 to 2000, however, the 5-year survival rate for children diagnosed with cancer was 80%. Significant progress has been built in the last 25 years as there are now approximately 270,000 survivors of pediatric cancer in the U.S., which translates to approximately 1 in every 640 young adults being a survivor of childhood cancer. However, as studies have shown, as patient needs increase, the likelihood of having an unmet need also increases. For the AYA population, 2 out of 3 childhood cancer survivors will develop a
complication due to the therapy they received, and 1 out of 3 will develop serious or life-threatening complications, meaning they will need treatment and follow-up care. In addition, AYAs may experience greater difficulties
adhering to treatment, which may negatively impact future outcomes.
An AYA survivor faces a variety of issues as a result of their cancer diagnosis and treatment that are unique to their particular age group which differentiate their survivor population from the adult survivor population. For example, AYA survivors report that their education, employment,
sexual functioning, marriage,
fertility
Fertility is the capability to produce offspring through reproduction following the onset of sexual maturity. The fertility rate is the average number of children born by a female during her lifetime and is quantified demographically. Fertili ...
, and other life values are impacted by their cancer. Compared to adult survivors, AYA survivors have a much greater risk of getting a second
primary malignancy as a side effect of the treatment for their original diagnosis. It is believed that AYAs have a much higher relative risk of developing a second primary cancer because the intensity of the treatment for their original diagnosis, typically including any combination of
chemotherapy
Chemotherapy (often abbreviated to chemo and sometimes CTX or CTx) is a type of cancer treatment that uses one or more anti-cancer drugs (chemotherapeutic agents or alkylating agents) as part of a standardized chemotherapy regimen. Chemotherap ...
, surgery, and radiation therapy, is much higher than the level of intensity given to patients over 40.
Furthermore, since AYA survivors are diagnosed and treated at such a young age, their length of time as a survivor is much longer than their adult counterparts, making it more likely they will face a second primary cancer in their lifetime.
Barriers to quality long-term follow-up care
Childhood cancer survivors, in particular, need comprehensive long-term follow-up care to thrive. One way this can be accomplished is through continuous follow-up care with a
primary care physician
A primary care physician (PCP) is a physician who provides both the first contact for a person with an undiagnosed health concern as well as continuing care of varied medical conditions, not limited by cause, organ system, or diagnosis. The term ...
who is trained to identify possible late effects from previous treatments and therapies.
The
Children's Oncology Group
The Children's Oncology Group (COG), a clinical trials group supported by the National Cancer Institute (NCI), is the world's largest organization devoted exclusively to pediatric cancer research. The COG conducts a spectrum of clinical research a ...
(COG) has designed a set of survivorship guidelines that hope to aid both health care professionals and survivors themselves, in both the intricacies and basics of long-term follow-up care. The COG recommends that patients or their families put together their own treatment summary, so they can have their treatment history with them when they visit any health care provider. The COG suggests that all survivors include the following in their treatment summaries:
*Name of disease, date of diagnosis, stage of disease, contact information of all clinics and hospitals where care was received
*Names and doses of any chemotherapy received
*Names and doses of any radiation received, and the area of the body that was radiated
*Names and dates of all surgeries
*For people receiving a
transplant, the type of transplant, where it was received, and whether chronic
graft-versus-host disease developed
*Names and dates of any significant complications and treatment received for those complications
With the treatment summary, experts hope that survivors will be better equipped to maintain quality follow-up care long after their original treatment. This is especially important for the AYA population, in particular, because they are typically facing major social changes regarding their
relationship status
Civil status, or marital status, are the distinct options that describe a person's relationship with a significant other. ''Married'', '' single'', '' divorced'', and ''widowed'' are examples of civil status.
''Civil status'' and ''marital stat ...
, employment or education status, their insurance coverage, and even their place of residence, etc. Typically, most of these factors are stable for most older adults, and when they experience any changes, it would usually occur in one or two aspects of their life at a time. However, with people under the age of 40 is when most people undergo the most change. This reality underscores the importance of a smooth transition from child-centered to adult-focused health care services through which they are consistently managed.
Impact of Affordable Care Act on the AYA survivor population
The US
Affordable Care Act
The Affordable Care Act (ACA), formally known as the Patient Protection and Affordable Care Act and colloquially known as Obamacare, is a landmark U.S. federal statute enacted by the 111th United States Congress and signed into law by Presid ...
(ACA) in 2010 makes it illegal for health insurance providers to deny coverage for a
pre-existing condition
In the context of healthcare in the United States, a pre-existing condition is a medical condition that started before a person's health insurance went into effect. Before 2014, some insurance policies would not cover expenses due to pre-existin ...
, such as previously having survived cancer.
Young adults are required to have health insurance coverage and, with a few exceptions, will be able to be covered under their parent's coverage until the age of 26 as a dependent in their parent's plan.
[
]
Care
Studies among endometrial cancer
Endometrial cancer is a cancer that arises from the endometrium (the lining of the uterus or womb). It is the result of the abnormal growth of cells that have the ability to invade or spread to other parts of the body. The first sign is most o ...
survivors show that satisfaction with information provided about the disease and treatment increases the quality of life, lowers depression and results in less anxiety. People who receive information on paper, compared to oral
The word oral may refer to:
Relating to the mouth
* Relating to the mouth, the first portion of the alimentary canal that primarily receives food and liquid
**Oral administration of medicines
** Oral examination (also known as an oral exam or or ...
, indicate that they receive more information and are more satisfied about the information provided. The US Institute of Medicine
The National Academy of Medicine (NAM), formerly called the Institute of Medicine (IoM) until 2015, is an American nonprofit, non-governmental organization. The National Academy of Medicine is a part of the National Academies of Sciences, E ...
and the Dutch Health Council
The Health Council of the Netherlands or the Dutch Health Council ( nl, Gezondheidsraad) is an independent Dutch scientific advisory body with the task of advising the government and parliament about matters in the areas of public health
Pub ...
recommend the use of a written "survivorship care plan", which is a summary of a patient's course of treatment, with recommendations for subsequent surveillance, management of late effects, and strategies for health promotion.
Cancer survivors are encouraged to meet the same guidelines for physical activity as the rest of the population. However, less than one-third of US cancer survivors met the Physical Activity Guideline for Americans. Increased physical activity reduces both all-cause and cancer-specific mortality in breast and colorectal cancer
Colorectal cancer (CRC), also known as bowel cancer, colon cancer, or rectal cancer, is the development of cancer from the colon or rectum (parts of the large intestine). Signs and symptoms may include blood in the stool, a change in bowel m ...
survivors as well as all cancer survivors. In addition, sedentary
Sedentary lifestyle is a lifestyle type, in which one is physically inactive and does little or no physical movement and or exercise. A person living a sedentary lifestyle is often sitting or lying down while engaged in an activity like soci ...
behaviors, particularly prolonged sitting, were associated with worse survival outcomes. Physical activity improves quality of life among a range of cancer survivors and may also assist with cancer-related fatigue and common co-morbidities.
Diet can also impact long-term mortality, with evidence across various cancer types.
However, adherence to diet and exercise recommendations among cancer survivors is often poor.
Digital behaviour change interventions can be successful at increasing physical activity and may also help with diet in cancer survivors.
In breast cancer survivors, home-based multidimensional survivorship programmes have short-term beneficial impacts on quality of life and can reduce anxiety, fatigue and insomnia
Insomnia, also known as sleeplessness, is a sleep disorder in which people have trouble sleeping. They may have difficulty falling asleep, or staying asleep as long as desired. Insomnia is typically followed by daytime sleepiness, low energy, ...
. Mindfulness-based survivorship programs may be an effective way to improve the mental health
Mental health encompasses emotional, psychological, and social well-being, influencing cognition, perception, and behavior. It likewise determines how an individual handles stress, interpersonal relationships, and decision-making. Mental health ...
of cancer survivors.
Family members
Family members can be significantly affected by the cancer experience of their loved ones. For parents of children with cancer, finishing treatment can be a particularly vulnerable time. In the post-treatment period, some parents may experience increases in anxiety, depression and feelings of helplessness. A sub-group of parents report post-traumatic stress symptoms up to years after treatment completion. Evidence-based psychological interventions tailored to the needs of parents of childhood cancer survivors may assist parents in resuming their normal lives after their child has finished treatment.
Spouses of cancer survivors are more likely than other people to experience anxiety in the years after their partner's successful treatment. Being married reduces the cancer survivor's risk of developing post-traumatic stress disorder
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on ...
or other psychological difficulties, but it increases the risk of the spouse developing mental health symptoms.
See also
* Learning problems in childhood cancer
*Psycho-oncology
Psycho-oncology is an interdisciplinary field at the intersection of physical, psychological, social, and behavioral aspects of the cancer experience for both patients and caregivers. Also known as psychiatric oncology or psychosocial oncology, r ...
Notes
References
{{Reflist, 30em , refs=
[{{cite book , vauthors = Sulik GA , title = Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health , url = https://archive.org/details/pinkribbonbluesh0000suli , url-access = registration , publisher = Oxford University Press , location = USA , year = 2010 , isbn = 978-0-19-974045-1 , oclc = 535493589 ]
[{{cite journal , vauthors = Zwickey H, Schiffke HC , title = Genetic correlates of Chinese medicine: in search of a common language , journal = Journal of Alternative and Complementary Medicine , volume = 13 , issue = 2 , pages = 183–4 , date = March 2007 , pmid = 17388756 , doi = 10.1089/act.2007.13406 ]
[{{cite news , title=Remy's woes befall many after cancer: Depression can hit as survivors adjust , work=]Boston Globe
''The Boston Globe'' is an American daily newspaper founded and based in Boston, Massachusetts. The newspaper has won a total of 27 Pulitzer Prizes, and has a total circulation of close to 300,000 print and digital subscribers. ''The Boston Glob ...
, vauthors = Smith S , url=http://www.boston.com/news/health/articles/2009/08/14/depression_that_hit_remy_befalls_many_after_cancer/ , date=14 August 2009
[{{cite journal , vauthors = Twombly R , title = Post-traumatic stress disorder in childhood cancer survivors: how common is it? , journal = Journal of the National Cancer Institute , volume = 93 , issue = 4 , pages = 262–3 , date = February 2001 , pmid = 11181770 , doi = 10.1093/jnci/93.4.262 ]
[{{cite journal , vauthors = Recklitis CJ, Diller LR, Li X, Najita J, Robison LL, Zeltzer L , title = Suicide ideation in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study , journal = Journal of Clinical Oncology , volume = 28 , issue = 4 , pages = 655–61 , date = February 2010 , pmid = 19841325 , pmc = 2816000 , doi = 10.1200/JCO.2009.22.8635 ]
[{{cite news , url = http://www.allbusiness.com/medicine-health/diseases-disorders-cancer/11927794-1.html , title = Cancer survivors face psychological challenges , journal = Sun-Sentinel , location = Fort Lauderdale, Florida , date = 22 January 2009 ][{{cite news , vauthors = Jennings D , work= ]The New York Times
''The New York Times'' (''the Times'', ''NYT'', or the Gray Lady) is a daily newspaper based in New York City with a worldwide readership reported in 2020 to comprise a declining 840,000 paid print subscribers, and a growing 6 million paid ...
, url= https://www.nytimes.com/2009/06/30/health/30case.html , title=Losing a Comforting Ritual: Treatment , date=29 June 2009 [{{cite journal , vauthors = Yeh JM, Nekhlyudov L, Goldie SJ, Mertens AC, Diller L , title = A model-based estimate of cumulative excess mortality in survivors of childhood cancer , journal = Annals of Internal Medicine , volume = 152 , issue = 7 , pages = 409–17, W131-8 , date = April 2010 , pmid = 20368646 , pmc = 3086591 , doi = 10.7326/0003-4819-152-7-201004060-00005 ][{{cite news , vauthors = Neergaard L , url = http://blog.mlive.com/kalamazoo_gazette_extra/2007/10/survivor_plans_a_longterm_canc.html , title = 'Survivor plans' a long-term cancer-treatment strategy , agency = Associated Press , date = 23 October 2007]
[{{cite web
, url= http://cancercontrol.cancer.gov/ocs/definitions.html
, title= DCCPS: OCS: About Cancer Survivorship Research: Survivorship Definitions
, date= 6 November 2006
, publisher= Office of Cancer Survivorship of the US ]National Cancer Institute
The National Cancer Institute (NCI) coordinates the United States National Cancer Program and is part of the National Institutes of Health (NIH), which is one of eleven agencies that are part of the U.S. Department of Health and Human Services. ...
, access-date= 30 November 2010
, url-status= dead
, archive-url= https://web.archive.org/web/20110102141955/http://cancercontrol.cancer.gov/ocs/definitions.html
, archive-date= 2 January 2011
[{{cite web
, url = http://www.macmillan.org.uk/GetInvolved/Campaigns/Survivorship/Livingwithorbeyondcancer.aspx
, title = Living with or beyond cancer
, publisher = Macmillan Cancer Support
, access-date = 2010-11-30
, url-status = dead
, archive-url = https://web.archive.org/web/20110716065341/http://www.macmillan.org.uk/GetInvolved/Campaigns/Survivorship/Livingwithorbeyondcancer.aspx
, archive-date = 16 July 2011]
[{{cite web
, url = http://www.macmillan.org.uk/GetInvolved/Campaigns/Survivorship/Macmillan_and_survivorship.aspx
, title = Living with cancer
, publisher = Macmillan Cancer Support
, access-date = 30 November 2010
, url-status = dead
, archive-url = https://web.archive.org/web/20100419132843/http://www.macmillan.org.uk/GetInvolved/Campaigns/Survivorship/Macmillan_and_survivorship.aspx
, archive-date = 19 April 2010]
[{{cite journal , vauthors = Hoffman KE, McCarthy EP, Recklitis CJ, Ng AK , title = Psychological distress in long-term survivors of adult-onset cancer: results from a national survey , journal = Archives of Internal Medicine , volume = 169 , issue = 14 , pages = 1274–81 , date = July 2009 , pmid = 19636028 , doi = 10.1001/archinternmed.2009.179 , doi-access = free ]
[{{cite journal , vauthors = Recklitis CJ, Lockwood RA, Rothwell MA, Diller LR , title = Suicidal ideation and attempts in adult survivors of childhood cancer , journal = Journal of Clinical Oncology , volume = 24 , issue = 24 , pages = 3852–7 , date = August 2006 , pmid = 16921037 , doi = 10.1200/JCO.2006.06.5409 ]
External links
Information about survivorship
at Cancer.Net by the American Society of Clinical Oncology
The American Society of Clinical Oncology (ASCO) is a professional organization representing physicians of all oncology sub-specialties who care for people with cancer. Founded in 1964 by Fred Ansfield, Harry Bisel, Herman Freckman, Arnoldus G ...
National Coalition for Cancer Survivorship
Oncology