Navigating Prostate Cancer: A Map Of The Territory And Guidelines For Leveling The Playing Field Shared By Patients, Care Providers, Clinical Researchers, And Advocates

Prostate cancer, like other complex biomedical conditions, must be understood from multiple perspectives. This article presents a formal analytic model to serve as a conceptual map for exploring 4 distinctly different domains of prostate cancer. A navigational metaphor is used to reflect the challenges one encounters in crossing over from one domain to the others, without explicit guidelines to aid in this endeavor. Such a model levels the playing field shared by patients, care providers, clinical researchers, and advocates so that informed decisions can be made regarding treatment. It also helps all sub-groups within the prostate cancer community to achieve a deeper understanding of this potentially lethal disease and communicate more effectively with each other.


Kingdom of the Sick
In her insightful and courageous exploration of cancer both as a lived-experience and as a social metaphor, Sontag observed that: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only one passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. " [1,p.iii.].
Most people in Western societies are able to negotiate that rite of passage with the help of their primary care physician and other medical specialists. However, there is a growing dissatisfaction with how those doctors apply the conventional medical model to create a rigid separation between themselves and their patients. That model of medical practice assumes that the doctor, as the outside expert, has primary responsibility for making the most important decisions that affect his/her patient, who is assigned the role of passive participant, or simply as the object of treatment [2]. However, dissatisfaction with the traditional medical model extends far beyond insisting that patients should be recognized as partners in the decision-making process. There has been a rejection of the fundamental premise of the traditional medical model that disease entities can be reduced to their lowest common denominator. In the case of cancer, this reductionist mind-set has resulted in a focus on the structural, cellular characteristics of cancer and the complex genetic control mechanisms that transform a "normal cell" into a "cancerous process". For example, Vogelstein and Kinzler [3] flatly state that the essence of cancer can be summed up in a single sentence: 'it is a genetic disease' .
However, an alternative to this overly simplistic, reductionist model was proposed over 25 years by Engels [4]. Rather than reducing a medical condition to its most basic level, a biopsychosocial perspective considers it from increasing levels of complexity, including the conscious awareness of the patient about his/her illness. From this perspective, a disease is not just something a patient "has". It can also be regarded as a process he/she helps to create and perpetuate. Instead of considering the patient as a passive victim of his/her condition, this new paradigm empowers the patient to assume authorship over a medical narrative that he/she co-creates and can change.
Doctor and patient can be seen as engaging in a dialogue that uses a new language to transform the way that chronic illnesses like cancer are understood and treated. When viewed through the lens of this new medical model, cancer is not just a collection of signs and symptoms that can be observed using the latest imaging technology and represented in a patient's clinical history. Rather, it must be understood as something that affects the entire person and his/her social milieu. From a holistic perspective, cancer is now regarded as a chronic, multi-systemic disease that affects the person's body, mind, emotions, and spirit [5][6][7]. Furthermore, a patient's illness reverberates throughout his/her entire social network.
Hippocrates, regarded as the father of modern medicine, recognized this reality by reportedly saying 'it is more important to consider what person the disease has than it is to consider what disease the person has. ' In this respect, he anticipated by about 2,000 years the development of a "new approach" to diagnosing and treating cancer that has been labeled "integrative oncology" [5]. Integrative oncology is an example of a healing-oriented medicine "that takes account of the whole person [mind, body, and spirit] as well as all aspects of lifestyle. It emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and complementary" [5,p.vii]. This perspective is also endorsed by Geffen [6] and Servan-Schreibner [7], as well in the plethora of self-help manuals echoing this theme [8][9][10]. When viewed from this holistic perspective, cancer can be thought of as existing in a patient's "life space", a term introduced by Lewin [11] to refer to the sum total of all factors affecting a person at a particular moment in time, as well as having a tangible reality as a bio-psychosocial process.

Cancer
According to Rose and Dobson [12], a scientific model is fundamentally different from a theory in a number of ways. In previous publications [13,14], I have described how to create a "formal analytic model" that provides a conceptual map for considering all dimensions that are associated with various clinical conditions (self-injurious behavior and Prader-Willi syndrome, for example) from a bio-psychosocial perspective.
As Rose and Dobson [12]  Cancer as a dynamic process that takes place over time. Here again, the division into segments on the left or right depends on whether this process is described Either using the precise language of an Outsider that can be consensually validated Or subjectively, in terms of the as-lived experiences of the Insider who is taking this journey. Each frame of reference is explored below to illustrate how the model facilitates access to information on topics that might otherwise be considered to be restricted to a particular discipline or segment within the prostate cancer community.

Considered from the Standpoint of an Outside Observer
In the scientific literature, cancers are named according to a classification scheme that is based on their site of origin. Cancers are also classified based on information about the extent of their progression at the time of their diagnosis.
Within this frame of reference, the primary objective is to use the map to consider issues related to diagnosing prostate cancer, determining its stage is at the time of diagnosis and making reasonable judgments about if and how it should be treated. Scholz [17] observed that prostate cancer is not a singular disease. He regards it as an umbrella term that covers five major stages and 15 sub-types. The literature referenced below helps provide some order to this classification process, while covering a wide range of topics of interest to patients, care providers, clinical researchers, and advocates. Prostate cancer as a disease entity, using nouns to describe it from an outsider's perspective

Quadrant 2:
Prostate cancer as something that one has, considered from the patient's perspective

Quadrant 3:
The natural history of prostate cancer, using verbs to describe it from an outsider's perspective

Quadrant 4:
A patient's perspective journey with prostate cancer, using verbs to describe it as an as-lived experience Worthington [18], now in its 4th edition.

Characteristics of a prostate cancer cell that enable it
to metastasize can be described in terms of 8 hallmarks (essential features) and 2 enabling conditions [19].
3. Use of imaging studies and biomarkers to stage CaP is reviewed in Scholz [17], particularly chapters 3,4,5 and 6.

Quadrant 2 -Prostate Cancer as Something I Have -Becoming a Well-Adjusted Cancer Patient
Being diagnosed with prostate cancer is like being air dropped into a familiar territory without navigational guidelines. For most men, hearing the words "you have prostate cancer" brings about a profound shift in our identity, even if we may have suspected for some time that this might be the case. This frame of reference provides a map for exploring the transition from "normalcy" into becoming a cancer patient, or as Sontag [1] put it, becoming a citizen in the kingdom of the sick. Roth [10] expanded upon the 5 stages of grief described by Kubler-Ross [22] to describe the terrain one must navigate in order to become a well-adjusted cancer patient.
1. Stop denying that a problem exists.
2. Overcome anger that one is a victim of unfair circumstances.
3. Resist the temptation to bargain for a reprieve from your cancer.

Correct any depression you might feel about the
hopelessness of your situation.

Accept reality as it exists in the here and now.
This is not a linear process. Roth [10] correctly emphasized that patients zig-zag back and forth among various stages.
However, they are guideposts that can be used to mark one's location on this first stage of the more challenging journey described in Quadrant 4.

Quadrant 3 -The Natural History of Prostate Cancer as a Biological Process -Considered from an Evolutionary
Perspective Nature is neither "good" nor "bad". Events unfold according to what can be described as "the natural scheme of things". At least this is the perspective taken when one looks at prostate cancer as a dynamic biological process using action verbs to describe it without the emotional overtones associated with the adjectives that are used to modify nouns as is the case in Quadrant 1, where cancers are described as "aggressive" or "potentially lethal". Here their growth patterns and characteristics are mapped out without any judgments about whether or not this is desirable or undesirable.
Hanin [23] presented a mathematical model of the natural history of prostate cancer based on certain biological hypotheses supported by the rapidly accumulating scientific literature on this topic. Other investigators [24,25] compare cancer's evolution in a patient's body to the origin of a new species from a common ancestral organism, using principles derived from Darwinian evolutionary theory. This evolution takes place in four stages or phases: 1. A period of Dormancy often lasts many years, during which time the primary tumor establishes a metastatic niche for subsequent colonization. This "seed and soil" hypothesis [26] accounts for the resistance many types of prostate cancer show to conventional attempts to "cure" them. described a type of "emotional judo" that helps one keep emotional balance and perspective during turbulent times.

This is followed by a period of
Stage 5 -Learn to cope with the stressors you encounter by using mindfulness-based, stress reduction exercises [36].
Stage 6 -Identify your purpose, mission, and a vision of the legacy you wish to leave behind by conducting a thorough life assessment. A useful framework for discovering your authentic self during your journey with cancer is presented by Thomson [37]. The account by Ryan and Ryan [30] of their heroic battle with prostate cancer as a husband and wife team is as inspirational now as when it was published 40 years ago.
They achieved their common purpose of completing their final novel during the cancer's terminal stages.
Stage 7 -A diagnosis of cancer does not mean that you have been given an "expiration date". Instead, it can kindle a process of spiritual growth [38][39][40].
As with any journey, there are many paths one can take along the way-some more clearly marked than others. In the case of cancer, as with life in general, they all lead to the same endpoint.
Each of us will die due to some unforeseen circumstance. To that end; all of the references cited in this article, as well as additional resources, have been offered to a major cancer treatment center in New York City that provides services to men with prostate cancer in the larger metropolitan area.
These could then be available to all interested members of