Introduction to Prognosis:
Curable, Incurable, Transitional, Terminal

A diagnosis of cancer can be overwhelming and even devastating. But a thorough understanding of the four distinct and separate prognostic stages of malignant disease -- curable, incurable, transitional and terminal—is the first step toward peace. The major thrust of this book is to define how different the challenges and expectations are at each prognostic stage. It is critical before proceeding to understand that times have changed, and in the modern era most patients do not progress through all stages. Curable patients do not necessarily progress to incurable. Incurable patients do not necessarily progress to transitional and terminal.

The definitions of the four prognostic stages of cancer are:

1. Curable: With this type of cancer, proven treatments are available for the complete eradication of all malignant cells from the body. Today, patients may live out their normal life expectancy. Embracing the hopefulness of their situation is the psychological challenge, and transformation to maturity through the experience is the spiritual goal.
   
   
2. Incurable (controllable): At this stage, treatment is not available that can totally eradicate the malignancy, but treatment is available that may control it. Some patients with incurable cancer may live out a normal life span and die with rather than of cancer. The goal of treatment here is cancer control. The psychological goal is transcendence or living with, above, and in spite of the present cancer. The spiritual goal is enlightenment or full consciousness of mortality and the precious fragility of life.
   
   
3. Transitional: Here, treatments to control the cancer become exhausted, and the goal of treatment is symptom control and control of medical problems arising from a progressing cancer -- in other words, life without suffering. Patients often retire from some of life’s roles at this point yet may remain engaged in life -- but with an acute awareness that they are approaching life’s end. The psychological challenge is to embrace the unique opportunity of conscious mortality, gracefully transferring life to those one cares about. One must look back and make peace with life and look forward and make peace with death. The spiritual goal is divestment.
   
   
4. Terminal: There is no available treatment that can control this stage of cancer, and the patient is no longer able to transcend the cancer and carry on meaningful life. The patient is usually semi-conscious and reduced to a limited state. The treatment goal shifts to comfort and support with active withdrawal of all treatments that may prolong the state of suffering – essentially death without suffering. The psychological challenge for the family as much as the patient is protection of dignity. The ultimate spiritual goal of terminal cancer is release: letting go.

The use of the term prognostic stage is different from the more familiar use of the term stage to define the degree of cancer. Stage refers to how advanced the cancer is after all the studies are completed to define its extent. The cancer staging systems in use provide a scale from early, localized cancers (Stage 1) to cancers that have spread throughout the body (Stage 4). Prognostic stage often parallels the cancer stage; localized cancers are often curable, while cancers that have spread are often incurable. With modern advances in cancer therapy, however, some Stage 4 cancers are curable, while some localized but resistant cancers remain incurable.

At initial diagnosis or at relapse, the greatest concern of the patient and family is the prognostic stage. Yet the actual question of prognosis may be lost in reporting of details about staging studies, as in “The tests show no signs of spread” or “The cancer has spread to the lymph nodes.” The question “What’s my prognosis?” may not be directly asked, and if asked may not be directly answered. The many reasons this question is difficult to ask and answer are the subject of this book. The common reasons given for this difficulty are often insulting to patients and physicians -- from the patient’s purported need to avoid prognostic information to maintain denial, to the physician protecting the patient from information he feels will be too much for the patient to handle. The reason this question is so difficult is not human weakness, but complexity.

The complexity comes down to two often-quoted cases: “They told Uncle Jim they got it all, and he was dead in six months!” and “They told my mother she would be dead in a year, and she lived 30 years!” The joke about the old woman who comes to the emergency room to be admitted because “They gave me six months to live, and my time is up tomorrow!” also comes to mind. These anecdotes highlight the physician’s problem of issuing the prognosis as a fact rather than an educated guess, and the patient’s error in often taking the prognosis too literally. Every experienced oncologist has patients whose cancer did not read the textbook.

In spite of the humbling nature of the art, prognostication is a critical step, for many other issues only make sense in the context of a prognosis. With a change in prognostic stage, the overall goal of treatment shifts, the treatment intensity shifts, the psychological challenge shifts, and the spiritual challenge shifts. Also, the life expectancy often shifts.

Surprising overlaps between these prognostic categories can exist, as well. An incurable cancer patient may have an average life expectancy of years; the tumor may be slow growing and respond to a variety of treatments. A curable cancer patient may have an average life expectancy of months. Even with a cancer that is technically curable, cure can sometimes be rare, and those who are not cured decrease the average survival rate. The table below lists the prognostic stages and the shifts in critical issues at each prognostic stage:

	Curable	Incurable	Transitional	Terminal
Goal	Cancer Eradication	Cancer Control	Life Without Suffering	Death Without Suffering
Treatment	Aggressive	Least to Most Aggressive	Aggressive Symptom Control	Withdrawal and Comfort
Prognosis	Either / Or	Remission Relapse	Weeks to Months	Hours to Days
Psychology	Hope / Anxiety	Transcendence / “Cancern”	Grace / Bitterness	Dignity / Shame
Spirituality	Transformation / Maturity	Enlightenment	Divestment	Release / Letting Go

The table is self-explanatory to a degree, but terms must be carefully defined.

For curable cancer, the goal is obviously complete eradication of cancer. Because cure is possible, treatment may be very aggressive and disrupt life for a period time. More than a few have concluded in the midst of side effects that the cure is worse than the disease. The psychological goal is hope: The patient must seize the real possibility the cancer may never return. This hope reduces the anxiety and strengthens the resolve to get through treatment. The spiritual goal is transformation to a more mature self through the experience. Fortunately we are all familiar with family and friends who have been cured of cancer. In discussing my career in oncology with a high school friend of 40 years ago he put this well. “It used to be you said the word cancer in a whisper, for you knew it was synonymous with death. Now we all know people cured and we hear the word in much more hopeful terms”.

Incurable cancer differs from curable on every front. First, the overall goal is control rather than cure. As such, the order of treatment choice is from least disruptive to most disruptive, preferably with minimal side effects, allowing the patient to live with and in spite of cancer. Some patients with incurable cancer and no symptoms may elect to defer therapy, taking advantage of their period without symptoms before introducing therapy that may have considerable side effects. The psychological goal is transcendence: living above the cancer. It is not denial of cancer, for the patient is aware of the true nature of the situation and is under treatment. Instead, it is the ignoring of cancer and realizing that one has the strength to continue to complete the work of life. The negative psychological possibility is “cancern,” a play on the word concern, in which the continued presence of cancer becomes the singular obsession, as if one is living in a haunted body, where every ache brings the terror of progressive cancer. The spiritual goal is enlightenment, for the patient with incurable cancer can be fully awakened, perhaps for the first time, to mortality and the precious fragility of life. It is essentially the non-Hollywood ending, the denial of one’s fundamental desire to live a long life, and the individual response to the situation. A modern story about incurable cancer is the autobiography of Gilda Radner: It’s Always Something.

Transitional cancer is the least familiar category but one of the most important. When patients have exhausted all therapies to control the cancer, they are in transition from therapy directed at the cancer to therapies directed at symptoms. That they no longer have meaningful options takes them out of the category of incurable (and control), but the fact that they may still be capable of a transcendent and abundant life takes them out of the category of terminal. The goal and hope at the transitional stage is symptom control or life without suffering. Such patients may transition from a work life to a retired life, and may limit their roles in a number of ways in recognition of their symptoms. Although cancer treatments to address the whole of the cancer are no longer applicable, if symptoms can be controlled with a focal application of treatment to shrink the cancer and alleviate a symptom, this is still appropriate. The psychological goal is grace, as one makes peace with life and death, in tension with bitterness and fear. The spiritual goal is divestment, as in “freely, freely you have received (life), and freely, freely you give (life).” Randy Pausch in The Last Lecture taught all who have read or heard his masterpiece the rich meaning possible when this state is faced.

The term palliative care is the current term for treatment directed at symptom control. It refers to the goal of palliating, or bringing comfort while trying to preserve quality of life. It describes the medical role of physicians and nurse. Transitional defines the spiritual state of the patient.

Terminal cancer is actually one of the most familiar prognostic stages, for 25 years of hospice has increased awareness of end of life care. Yet the critical distinction of incurable, transitional and terminal is often poorly presented, and for many, incurable remains synonymous with terminal. Although the standard definition of terminal for the purpose of hospice entry is a prognosis of six months or less, it is almost unheard of that a patient with a prognosis of six months or less goes to hospice. While some view this a tragedy of denial in which both patients and physicians conspire to create the illusion of hope in a hopeless situation by administering ineffective and potentially toxic therapies, the truth is again complex. We live in a “good to the last drop” culture in which the terminal state is not defined by time remaining but by function remaining. As long as the capacity for living remains, one is not terminal, nor do most patients feel terminal. Stated another way, when all meaningful therapies to control the cancer are exhausted -- and one is no longer able to transcend the cancer and continue living -- then and only then is one terminal. Terminal is not a matter of months but rather hours or days when one is incapacitated and waiting to die. The goal of terminal care is death with dignity and death without suffering.

On the surface this notion of terminal may sound controversial and out of touch with the work of Elizabeth Kubler-Ross, who did more than any other to map the psychological and spiritual landscape of death and dying. Yet her axiom “to live until we die” perfectly defines the restrictive view of terminal. The overall goal in the terminal state is comfort. No meaningful cancer treatment options remain, and the patient is no longer able to transcend the cancer symptoms. The psychological goal then is peace and dignity, for greater than the fear of death is the fear of loss of dignity and being remembered in a degraded state. The spiritual goal is release and a graceful letting go. A modern, powerful, non-religious framing of the challenge is the story of Timothy Leary. Cardinal Bernardin in “The Gift of Peace” provides a universal spiritual perspective. The ultimate goal of terminal care is death, and therapies are withdrawn to allow nature to take its course, lest the dying state devoid of life be protracted.

Finally in spite of this book’s efforts to clarify these prognostic categories, information and categories may not always be helpful. In fact, such categories as curable, incurable, transitional and terminal, even carefully defined, can be devastating to some. Some patients cannot live without the hope of cure, and are sustained by that hope, whatever the objective prognosis or science predicts. Denial is not a psychological or character flaw for such patients. It is an effective coping strategy, and attempting to force them to see their situation more objectively is simply not helpful until they begin to raise the issue of a negative outcome themselves. Yet my experience has taught me that the truth about broad prognostic categories is often missing in discussions between patients and doctors, and on average this information is liberating. This is not a how–to book, but rather a series of observations on the capacity of the human spirit to adapt and continue to pursue life and happiness in the face of adversity. It is also the story of the grace that comes to most when that pursuit is no longer possible.