Personal Narrative: A Possible Cure For Cancer

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How our generation will cure cancer - Neeraj Lal - TEDxBrum

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But humans can read meaning into data and compose stories, even where this is unwarranted. Some scholars suggest that the narrative fallacy and other biases can be avoided by applying standard methodical checks for validity statistics and reliability statistics in terms of how data narratives are collected, analyzed, and presented. In mathematical sociology, the theory of comparative narratives was devised in order to describe and compare the structures expressed as "and" in a directed graph where multiple causal links incident into a node are conjoined of action-driven sequential events.

The structure directed graph is generated by letting the nodes stand for the states and the directed edges represent how the states are changed by specified actions. The action skeleton can then be abstracted, comprising a further digraph where the actions are depicted as nodes and edges take the form "action a co-determined in context of other actions action b ". Narratives can be both abstracted and generalised by imposing an algebra upon their structures and thence defining homomorphism between the algebras. The insertion of action-driven causal links in a narrative can be achieved using the method of Bayesian narratives. Developed by Peter Abell , the theory of Bayesian Narratives conceives a narrative as a directed graph comprising multiple causal links social interactions of the general form: "action a causes action b in a specified context".

In the absence of sufficient comparative cases to enable statistical treatment of the causal links, items of evidence in support and against a particular causal link are assembled and used to compute the Bayesian likelihood ratio of the link. Linearity is one of several narrative qualities that can be found in a musical composition. One theory is that of Theodore Adorno , who has suggested that "music recites itself, is its own context, narrates without narrative". The final word is yet to be said, regarding narratives in music, as there is still much to be determined. Unlike most forms of narratives that are inherently language based whether that be narratives presented in literature or orally , film narratives face additional challenges in creating a cohesive narrative.

Whereas the general assumption in literary theory is that a narrator must be present in order to develop a narrative, as Schmid proposes; [42] the act of an author writing his or her words in text is what communicates to the audience in this case readers the narrative of the text, and the author represents an act of narrative communication between the textual narrator and the narratee. This is in line with Fludernik's perspective on what's called cognitive narratology—which states that a literary text has the ability to manifest itself into an imagined, representational illusion that the reader will create for themselves, and can vary greatly from reader to reader. Film narrative does not have the luxury of having a textual narrator that guides its audience towards a formative narrative; nor does it have the ability to allow its audience to visually manifest the contents of its narrative in a unique fashion like literature does.

These cinematic devices, among others, contribute to the unique blend of visual and auditory storytelling that culminates to what Jose Landa refers to as a "visual narrative instance". The nature or existence of a formative narrative in many of the world's myths, folktales, and legends has been a topic of debate for many modern scholars; but the most common consensus among academics is that throughout most cultures, traditional mythologies and folklore tales are constructed and retold with a specific narrative purpose that serves to offer a society an understandable explanation of natural phenomenon—oftentimes absent of a verifiable author. These explanatory tales manifest themselves in various forms and serve different societal functions, including; life lessons individuals to learn from for example, the Ancient Greek tale of Icarus refusing to listen to his elders and flying too close to the sun , explain forces of nature or other natural phenomenon for example, the flood myth that spans cultures all over the world , [45] and lastly to provide an understanding of our own human nature, as exemplified by the myth of Cupid and Psyche.

Considering how mythologies have historically been transmitted and passed down through oral retellings, there is no qualitative or reliable method to precisely trace exactly where and when a tale originated; and since myths are rooted in a remote past, and are viewed as a factual account of happenings within the culture it originated from, the worldview present in many oral mythologies is from a cosmological perspective—one that is told from a voice that has no physical embodiment, and is passed down and modified from generation to generation. Myth is often used in an overarching sense to describe a multitude of folklore genres , but there is a significance in distinguishing the various forms of folklore in order to properly determine what narratives constitute as mythological, as esteemed anthropologist Sir James Frazer suggests.

Frazer contends that there are three primary categories of mythology now more broadly considered categories of folklore : Myths, legends, and folktales, and that by definition, each genre pulls its narrative from a different ontological source, and therefore have different implications within a civilization. Frazer states:. In the absence of a known author or original narrator, myth narratives are oftentimes referred to as prose narratives. Prose narratives tend to be relatively linear regarding the time period they occur in, and are traditionally marked by its natural flow of speech as opposed to the rhythmic structure found in various forms of literature such as poetry and Haikus.

The structure of prose narratives allows it to be easily understood by many—as the narrative generally starts at the beginning of the story, and ends when the protagonist has resolved the conflict. These kinds of narratives are generally accepted as true within society, and are told from a place of great reverence and sacredness. Myths are believed to occur in a remote past—one that is before the creation or establishment of the civilization they derive from, and are intended to provide an account for things such as our origins, natural phenomenon, as well as our own human nature.

The three functions were organized by cultural significance—with the first function being the most grand and sacred. The first function being sovereignty —and was divided into two additional categories: magical and juridical. This is a 'disquieting' aspect, terrifying from certain perspectives. The other aspect is more reassuring, more oriented to the human world. It is the 'juridical' part of the sovereign function. This implies that gods of the first function are responsible for the overall structure and order of the universe, and those gods who possess juridical sovereignty are more closely connected to the realm of humans and are responsible for the concept of justice and order. Odin is the author of the cosmos, and possessor of infinite esoteric knowledge—going so far as to sacrifice his eye for the accumulation of more knowledge.

While Tyr—seen as the "just god"—is more concerned with upholding justice, as illustrated by the epic myth of Tyr losing his hand in exchange for the monster Fenrir to cease his terrorization of the gods. What this tells us is that through these myths, concepts of universal wisdom and justice were able to be communicated to the Nordic people in the form of a mythological narrative.

These myths functioned to convey the themes of heroism, strength, and bravery and were most often represented in both the human world and the mythological world by valiant warriors. While the gods of the second function were still revered in society, they did not possess the same infinite knowledge found in the first category. A Norse god that would fall under the second function would be Thor —god of thunder.

Thor possessed great strength, and was often first into battle, as ordered by his father Odin. This second function reflects Indo-European cultures' high regard for the warrior class, and explains the belief in an afterlife that rewards a valiant death on the battlefield; for the Norse mythology, this is represented by Valhalla. These gods often presided over the realms of healing, prosperity, fertility, wealth, luxury, and youth—any kind of function that was easily related to by the common peasant farmer in a society.

Just as a farmer would live and sustain themselves off their land, the gods of the third function were responsible for the prosperity of their crops, and were also in charge of other forms of everyday life that would never be observed by the status of kings and warriors, such as mischievousness and promiscuity. An example found in Norse mythology could be seen through the god Freyr —a god who was closely connected to acts of debauchery and overindulging. A narrative can take on the shape of a story, which gives listeners an entertaining and collaborative avenue for acquiring knowledge. Many cultures use storytelling as a way to record histories, myths, and values.

These stories can be seen as living entities of narrative among cultural communities, as they carry the shared experience and history of the culture within them. Stories are often used within indigenous cultures in order to share knowledge to the younger generation. This promotes holistic thinking among native children, which works towards merging an individual and world identity. Such an identity upholds native epistemology and gives children a sense of belonging as their cultural identity develops through the sharing and passing on of stories.

For example, a number of indigenous stories are used to illustrate a value or lesson. In the Western Apache tribe, stories can be used to warn of the misfortune that befalls people when they do not follow acceptable behavior. One story speaks to the offense of a mother's meddling in her married son's life. In the story, the Western Apache tribe is under attack from a neighboring tribe, the Pimas. The Apache mother hears a scream. Thinking it is her son's wife screaming, she tries to intervene by yelling at him.

This alerts the Pima tribe to her location, and she is promptly killed due to intervening in her son's life. Indigenous American cultures use storytelling to teach children the values and lessons of life. Although storytelling provides entertainment, its primary purpose is to educate. American Indian elders also state that storytelling invites the listeners, especially children, to draw their own conclusions and perspectives while self-reflecting upon their lives. American Indian community members emphasize to children that the method of obtaining knowledge can be found in stories passed down through each generation.

Moreover, community members also let the children interpret and build a different perspective of each story. An emerging field of information warfare is the "battle of the narratives". The battle of the narratives is a full-blown battle in the cognitive dimension of the information environment, just as traditional warfare is fought in the physical domains air, land, sea, space, and cyberspace. One of the foundational struggles in warfare in the physical domains is to shape the environment such that the contest of arms will be fought on terms that are to one's advantage. Likewise, a key component of the battle of the narratives is to succeed in establishing the reasons for and potential outcomes of the conflict, on terms favorable to one's efforts.

In historiography , according to Lawrence Stone , narrative has traditionally been the main rhetorical device used by historians. In , at a time when the new Social History was demanding a social-science model of analysis, Stone detected a move back toward the narrative. Stone defined narrative as organized chronologically; focused on a single coherent story; descriptive rather than analytical; concerned with people not abstract circumstances; and dealing with the particular and specific rather than the collective and statistical.

He reported that, "More and more of the ' new historians ' are now trying to discover what was going on inside people's heads in the past, and what it was like to live in the past, questions which inevitably lead back to the use of narrative. Some philosophers identify narratives with a type of explanation. Mark Bevir argues, for example, that narratives explain actions by appealing to the beliefs and desires of actors and by locating webs of beliefs in the context of historical traditions.

Narrative is an alternative form of explanation to that associated with natural science. Historians committed to a social science approach, however, have criticized the narrowness of narrative and its preference for anecdote over analysis, and clever examples rather than statistical regularities. Storytelling rights may be broadly defined as the ethics of sharing narratives including—but not limited to—firsthand, secondhand and imagined stories. The ethics of retelling other people's stories may be explored through a number of questions : whose story is being told and how, what is the story's purpose or aim, what does the story promise for instance: empathy, redemption, authenticity, clarification --and at whose benefit?

Storytelling rights also implicates questions of consent, empathy , and accurate representation. While storytelling—and retelling—can function as a powerful tool for agency and advocacy , it can also lead to misunderstanding and exploitation. Storytelling rights is notably important in the genre of personal experience narrative. Academic disciplines such as performance, folklore, literature, anthropology , Cultural Studies and other social sciences may involve the study of storytelling rights, often hinging on ethics. From Wikipedia, the free encyclopedia. Account that presents connected events. For other uses of "story", see Story disambiguation.

Main article: Multiperspectivity. See also: Narrative therapy and Narrative psychology. Peter , Russian formalism : a metapoetics. ISBN OCLC Retrieved Rao Archaeological Survey of India. Brill, An Encyclopaedia of Indian Archaeology: Subjects. Archived from the original on Novel: A Forum on Fiction. JSTOR S2CID Oxford Research Encyclopedia of Literature. ISSN Introduction and general overview. Narrative psychology: Internet and resource guide. Le Moyne College. Retrieved September 28, The Self and Memory.

Can Fam Physician. PMC PMID Hyden, L. Health, Illness and Culture: Broken Narratives. New York: Routledge. Sulik Personality and language use in self-narratives. Journal of Research in Personality, 43, Narrative inquiry: Research tool and medium for professional development. European Journal of Teacher Education, 23 1 , 49— May Qualitative Inquiry. Western Journal of Nursing Research. Berlin: De Gruyter. New Literary History. ISSN X. The Oxford Companion to World Mythology. Reference Reviews. Symbolism and imagery in the story of Cupid and Psyche in Apuleius' Metamorphosis. Folklore: Electronic Journal of Folklore. August The Loeb Classical Library. Two vols. Small 8vo. Putnam's Sons, The Classical Review. By Janet Ruth Bacon.

London: Methuen, The Journal of Hellenic Studies. The Journal of American Folklore. The Journal of Religion. Journal of Transcultural Nursing, Traditional storytelling today: An international sourcebook. Social Sciences and Humanities Research Council. Storytelling rights : the uses of oral and written texts by urban adolescents. Cambridge [Cambridgeshire]: Cambridge University Press. Abbott, H. Cambridge: Cambridge University Press. Bal, Mieke. Introduction to the Theory of Narrative. Toronto: Toronto University Press.

Clandinin, D. The mean age of caregivers was Caregivers reported higher levels of distress and anxiety than did patients. The principal unmet caregiver needs were as follows:. There were no strong predictors of caregiver needs; however, unmet patient needs and caregiver anxiety were modestly associated with unmet needs in caregivers. Caregiver Tasks: A cross-sectional study demonstrated that participation in assisting patients in activities of daily living ADLs increased caregiver burden. The caregivers were mostly women, married to and living with the patients. Employment status and participation in ADLs were risk factors for increased burden on multivariate analysis.

Similarly, a survey of caregivers demonstrated that primary caregivers assumed a significant workload. On the other hand, primary caregivers experienced the most personal growth through the experiences. A subsequent systematic review supported the results of the two studies. The following list captures the resources that caregivers identified in multiple studies as important:. Factors associated with increased caregiver burden include the following:. Female gender is an established risk factor for increased burden. Women who were employed or who used emotion-focused coping were more likely to perceive burden.

Results suggest that interventions to address role strain and alternative coping strategies may be useful. Family caregivers often feel unprepared, have inadequate knowledge, and receive little guidance from the oncology team for providing care to the cancer patient. In addition, older caregivers of cancer patients may neglect their own health needs, have less time to exercise, forget to take their own prescription medications, and become fatigued from interrupted sleep. It is therefore common for older caregivers to have poor physical health, depression, and even increased mortality.

Younger caregivers must generally juggle work, family responsibilities, and sacrifices involving their social lives. Middle-aged caregivers typically worry about missed workdays, interruptions at work, taking leaves of absence, and reduced productivity. In a meta-analysis of empirical studies, Asian American caregivers were found to provide more caregiving hours than were White, African American, and Hispanic caregivers; to use lower levels of formal support services; and to have fewer financial resources, lower levels of education, and higher levels of depression than did the other subgroups.

This reluctance was rooted in the belief that talking about death or dying is bad luck, which could complicate discussions about prognosis and informed consent. Similarly, Hispanic and African American patients and caregivers underutilize community health resources, including counseling and support groups, home care, residential care, and hospice services. One important reason is that strong family ties may prevent these caregivers from seeking help outside of the family unit. The minority families relied more on informal caregiving from friends and relatives and had larger social support networks than did the White families. However, this increased sense of obligation to provide care for older family members was associated with more caregiving hours, greater resignation about caregiving, higher levels of caregiver strain, and a larger reduction in household income compared with White caregivers.

Another study analyzed reports of employment loss due to caregiving responsibilities. Results showed that African American and Hispanic caregivers were more likely than White caregivers to reduce their work hours to care for patients. In addition, African American and Hispanic caregivers were reluctant to use formal nursing home services for their loved ones. The decision to reduce work hours rather than place a relative in a nursing home was associated with increased psychological, social, and financial burden. Substantial out-of-pocket costs involved in caregiving can create financial strain for the families of patients with cancer. Low personal and household incomes and limited financial resources may also place families at risk of treatment noncompliance or making treatment-related decisions on the basis of income.

Informal caregiving is known to impose economic burdens on families. One study analyzed data from cancer survivors who responded to the U. Some research has shown an incremental increase in the economic burden of caregiving, assessed from disease and demographic characteristics. A study of 78 caregivers of women with advanced breast cancer showed that loss of productivity absenteeism and reduced productivity at work was greater for caregivers of women with progressive disease than for caregivers of those who were free of disease. The Family and Medical Leave Act of FMLA was designed to give employees the option of taking time off from work for their own serious medical condition or that of a relative without losing their jobs or benefits.

Role strain is experienced when the perceived rights, duties, and behaviors of one socially defined role e. A study of middle-aged caregivers showed that the more social roles a caregiver performed, the more likely the caregiver was to experience stress and negative affect. Cancer care is provided in multiple physical locations that vary in their ability to provide support services for caregivers. Thus, site of care may be considered a risk factor for caregiver burden. This claim is supported by the results of a qualitative interview study of 12 patients and 12 caregivers about the challenges faced in transitioning from hospital to home. An independent study of dyads demonstrated that the transition to home is very stressful because of the need to deal with symptoms, and uncertainty about prognosis and disease progression.

Unplanned changes in sites of care, such as hospital readmission, also place increased demands on caregivers. A total of dyads of older adults with cancer and their family caregivers were studied to determine factors for unplanned hospital admissions. These results suggest that symptom management interventions may reduce stressful events more than does increasing caregiver knowledge about symptoms. As conceptualized, coping strategies mediate the relationship between positive or negative consequences and the perception that the demands of caregiving exceed the available resources.

One group of investigators interviewed and surveyed 50 family caregivers of cancer patients receiving palliative care. Emotion-based coping was associated with less anxiety, while dysfunctional coping was associated with increased anxiety. Perceived burden was also associated with increased anxiety. As shown in the Transactional Model of Stress and Coping , caregivers and patients are interconnected. Evidence demonstrates a link between patient coping style and caregiver adjustment.

A cross-sectional study of baseline data from a trial of subspecialty palliative care confirmed the relationship in family caregivers of patients with incurable lung or colorectal cancer. Patient emotional support coping was associated with lower caregiver anxiety. This interconnectedness between caregiver and patient also involves threat appraisal the first step in the Transactional Model of Stress and Coping.

Caregiver assessment can be performed at any point of contact within the health care system. Ideally, a comprehensive caregiver assessment should be performed when the following occurs:[ 1 ]. In systems where caregivers are assessed, practitioners can acknowledge caregivers as valued members of the health care team. Caregiver assessment can identify family members most at risk of developing physical and mental health difficulties, so that additional services can be planned accordingly. Multiple instruments to measure caregiver burden are available, including the Zarit Burden Interview,[ 2 ] among others. Although there are many tools for measuring caregiver burden, a review [ 14 ] found only eight tools in English for psychometric evaluation of cancer caregivers.

Additionally, 16 conceptual domains within five overarching themes were identified across the eight instruments. Although the tools showed overlap in several domains, there was no single tool that measured all. Therefore, in assessing caregiver burden, it is prudent to utilize two or more instruments to obtain an evaluation across all domains. The cancer experience may be conceptualized as occurring in several relatively distinct phases, from screening to diagnosis and treatment to either long-term survivorship or the end of life. It seems reasonable to assume that the experiences of the caregiver also vary, given the interdependence of caregiver and patient. Few studies directly compare caregivers of cancer patients across the disease trajectory or patients at different stages of disease.

One research group conducted a qualitative study and interviewed 15 cancer caregivers before, during, and at 4 months after bone marrow transplant. Although the exemplars varied across the trajectory, two consistent themes regarding caregiver concerns emerged: uncertainty and the need for more information. Another study compared the results of two cross-sectional studies of caregivers of cancer patients who were in the late palliative phase or who were attending a pain clinic which the authors termed the curative phase. The results should be interpreted with caution, given the different inclusion criteria and different time periods of the study.

Furthermore, the group means may obscure meaningful changes in individual caregivers over time. A separate analysis demonstrated that symptom burdens in patients did not vary between cohorts, but both groups scored high on measures of weakness and fatigue. However, the methodology of the studies limits the drawing of firm conclusions. The evidence demonstrates that although the prevalence of unmet needs diminishes over time, a significant minority of caregivers continues to experience needs related to the cancer experience during the survivorship phase.

For example, a longitudinal study was designed to track the psychosocial, financial, and occupational impact of having ongoing needs as a caregiver in Australia. Of note, of the original participants completed surveys at 12 months, and completed surveys at 24 months. The end-of-life experiences of patients with advanced cancer influence the burden on caregivers and their eventual psychological adjustment during bereavement. The caregivers reported lower-than-expected mental and physical QOL. The average distress and number of unmet needs increased over time. Perceived social support did not change. Caregiver distress was predicted by lower optimism, higher unmet needs, and shortened time to patient death.

Patient QOL was not a predictor. Hospice care can provide critical support to caregivers as well as to patients. One group of investigators compared the burden and QOL of caregivers of patients with advanced cancer who were receiving active treatment with the burden and QOL of caregivers of patients who were receiving hospice care. The investigators found no difference in the perceived burden of caregiving and increased role limitations due to mental or emotional challenges; however, caregivers in the hospice group reported fewer physical limitations. Similarly, another group reported that longer hospice stays were associated with better patient QOL and better caregiver adjustment during bereavement. One study analyzed interviews with 1, family members of Medicare beneficiaries who died from advanced-stage lung or colorectal cancer.

Similarly, patients who received intensive care or had short enrollments were less frequently reported to have died in their preferred place. Caregivers may also require support to effectively participate in decisions about whether to provide patients with artificial nutrition or hydration ANH. Investigators conducted a prospective cross-sectional survey of 39 patients with advanced cancer and 30 relatives about their views on ANH. Patients were less concerned with adverse physical symptoms such as pain, agitation, and hunger than were their relatives. Many types of interventions have been tested to address the needs of informal caregivers.

The efficacy of these interventions has been mixed. Findings from a few meta-analyses have identified positive effects small to medium effects of psychosocial-educational interventions on caregivers and on patient-caregiver outcomes. One meta-analysis of 29 randomized clinical trials published from to [ 6 ] identified the following three major types of interventions:. The authors used a conceptual framework to organize the outcome data, integrating stress and coping theory, CBT, and quality of life QOL frameworks. Overall, all three interventions showed promise small to moderate effect for improving the following outcomes:. The authors noted only three studies that used CBT. However, all three studies using CBT noted significant improvement in psychological functioning in informal caregivers.

Overall, the authors suggested that programs that were structured, integrative, and goal oriented appeared to offer the greatest benefits. This initial work was expanded upon with a synthesis and meta-analyses of the effectiveness of CBT for improving psychological functioning in informal caregivers. The authors suggested that the broad definition of CBT and variations in the definition of informal caregivers may have limited results. Two additional reviews focused on literature published up until This section provides information about a few individual landmark studies. A number of limitations in studies to date prevent any conclusions about choosing an optimal intervention. Salient limitations include the following:.

Following are two tables containing brief descriptions of noteworthy reports to aid in understanding potential interventions and benefits. Table 1 organizes studies by type of intervention and highlights positive and negative studies. As outlined in the previous section, however, methodological limitations prevent comparisons or conclusions. Table 2 highlights some of the investigational studies that support the effectiveness of psychoeducational, problem-solving, and CBT interventions in which most of the work has been conducted.

As previously described in this summary, the mental and physical health and coping of patients and caregivers are interdependent. Several trials of subspecialty palliative care interventions have specifically targeted and measured caregiver outcomes. A systematic review highlighted the results of 14 studies of patients receiving end-of-life care. The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above. Updated National Alliance for Caregiving as reference 1. Added text to state that in a study of informal caregivers of patients undergoing palliative radiation therapy for advanced cancer, additional employment of the caregiver, cohabitation, poor patient performance status, and interest in accessing more support services were significantly correlated with higher caregiver burden cited Duimering et al.

This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about challenges and helpful interventions for caregivers of cancer patients. It is intended as a resource to inform and assist clinicians in the care of their patients. It does not provide formal guidelines or recommendations for making health care decisions. Board members review recently published articles each month to determine whether an article should:. Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.

Any comments or questions about the summary content should be submitted to Cancer. Do not contact the individual Board Members with questions or comments about the summaries. Board members will not respond to individual inquiries. Some of the reference citations in this summary are accompanied by a level-of-evidence designation. These designations are intended to help readers assess the strength of the evidence supporting the use of specific interventions or approaches. PDQ is a registered trademark. Although the content of PDQ documents can be used freely as text, it cannot be identified as an NCI PDQ cancer information summary unless it is presented in its entirety and is regularly updated.

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