Fighting Cancer with Knowledge and Hope: A Guide for Patients, Families, and Health Care Providers

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Fighting Cancer with Knowledge & Hope

Yale University Press

Chapter One

When I first laid eyes on Alice, I could tell she was in trouble. "Trouble" for me, a medical oncologist, means that a patient is sick from cancer and in urgent need of treatment. But like so many patients whom I meet for the first time, Alice was not even sure she had cancer. So "trouble" also means that I faced a daunting task: I had to explain to Alice (and her family) what cancer is, why it may have arisen, what it was doing to her body, which treatments were recommended, how those treatments worked, and how she could cope when her world was crashing in on her-all this in about an hour.

Furthermore, I needed to convey this information with great empathy and sensitivity, never forgetting that although my brain may sleep, eat, and breathe cancer, the cancer "lingo" is completely foreign to a person newly diagnosed with the disease.

As I present my assessment of a cancer situation to a new patient and family, my senses enter a state of heightened awareness: I continually monitor the body language of my listeners to discern if I am making myself understood, if my words are too strong or not strong enough, or if I should stop theflow of words to allow the necessary flow of emotions. I have taken to using a marker board, like a mini-lecture, to write out the technical words and details. As with so many other oncologists, there is no need to ask me, "What would you do if I were your brother, wife, or mother?" Please understand that this is always a given.

As Alice walked into my office for a consultation, her husband and daughter were close behind. She was clearly exhausted, gasped slightly with each breath, and, after spotting the chair nearest to me, slumped into it. She exuded a soft, sincere demeanor, though she was obviously weighed down by worry.

Alice gathered herself as I introduced myself, and then she asked me in a sweet, perplexed voice, "Doctor, what's wrong with me? I am so tired I can't even climb a flight of stairs. My stomach is bloated and I hardly eat anymore. Am I dying?"

Before I met with Alice, I had reviewed her medical records. She had recently seen her internist, complaining of several months of unremitting fatigue, loss of appetite, and shortness of breath with exertion. Her doctor had ordered CT scans of her chest, abdomen, and pelvis. These showed a large tumor on one of her ovaries, many other tumors throughout her abdomen, and smaller tumors throughout her lungs. He ordered a biopsy of one of the abdominal tumors, and it revealed a diagnosis of ovarian cancer. The tumors throughout Alice's abdomen and chest indicated that she had the most advanced stage of that cancer. A blood marker of ovarian cancer, named CA-125, was many times above the normal range, consistent with this diagnosis.

When Alice walked through the office doorway, I knew immediately that all her symptoms were caused by cancer. The sheer burden of having tumors involving so much of her body was exhausting her. The disease was competing with the rest of her body for vital nutrients, and the cancer was siphoning most of these away. The tumors in her lungs were interfering with the ability of her lungs to transfer oxygen to her bloodstream for delivery throughout her body; this accounted for her shortness of breath. The many tumors in her abdomen were causing her belly to swell and taking away her appetite.

I began to talk to her. "I can see that you are suffering. Your breathing appears labored to me, and I can tell that you must be struggling just to get through the day." With this, she nodded and began to weep. But this was a cry of relief; someone had finally explained why her condition was deteriorating so fast. "I will explain exactly what is wrong with you and tell you what we need to do to get you feeling better," I said. "But I want to start off by saying that you will very likely be feeling better soon." With that, she relaxed and started to breathe more easily.

I explained what her CT scans showed and what the pathology report indicated. I told her she had ovarian cancer and that it had spread from her ovary to her abdomen and into her lungs, which classified it as stage IV. I explained how the extent of the cancer was causing all her symptoms and that if we could shrink it, she would begin to feel better.

"Do I need chemo?" she asked. "I'm afraid of that, I don't know if my body can stand it." "Yes," I replied, "we do need to use chemotherapy. But since most of your symptoms are due to the growth of the cancer, once we stop that growth with chemotherapy, you will actually feel better. There certainly will be side effects from treatment, but we will monitor you closely for them and try to prevent as many as possible." Alice did not voice further opposition to the chemotherapy. She understood that she would be fighting for her life.

"The standard recommended treatment," I continued, "is two chemotherapy drugs, called Taxol and carboplatin, which are administered intravenously every three weeks. We are also participating in a study to determine whether adding a new medication to this standard treatment improves the outcome." We discussed the short-term and long-term side effects of chemotherapy and went over the pros and cons of participating in the clinical trial. I told her that after our meeting, she would visit one of our oncology nurses, who would further explain what to expect and how to prepare for treatment.

"Why can't it just all be cut out?" Alice asked. "For most cases of ovarian cancer," I replied, "surgery actually is the first step of treatment. But in your situation, because the cancer has spread outside of the abdomen and is causing so many symptoms, we need to attack it with a treatment that will shrink the cancer wherever it is growing in your body; the disease is too extensive at this point for surgery to be effective. So we need to start with chemotherapy and reserve surgery for a later date."

I inquired about her family history and whether other family members had been affected by cancer, in particular breast and ovarian cancer. When she answered yes, we discussed the need for genetic testing, which she wanted to do at another time. We talked briefly about her family life, habits, and spirituality as I tried to get a sense of the person.

After I answered the questions Alice and her family had, I told them about the counseling services for patients and families at our center: group counseling, in which those who have traveled or are traveling a similar road can share experiences; and individual counseling, in which patients can privately express to an experienced therapist their feelings, fears, and needs as a cancer patient and survivor.

We ended our first meeting exhausted. But we also ended it as partners, hopeful that Alice's condition would improve. I knew that we had covered a tremendous amount of new and complicated information and that Alice would probably remember only a part of it. I reassured her that we would have ample time, in future meetings together, to go over what we had discussed.

My meeting with Alice and her family highlights the essential information that any patient must find out when he or she is diagnosed with cancer. The following list summarizes this information.

When First Diagnosed: What You Need to Learn

* the type of cancer

* the stage (extent) of the cancer

* whether cure is to be expected

* possible environmental or genetic influences that may have predisposed you to develop cancer

* important aspects of the cancer, called "prognostic factors" (see chapter 2), that may help determine your prognosis

* whether you have other medical problems that may affect your choice of treatment

* recommended treatments, their schedules, and their duration

* side effects from treatment (likely and less likely), both short term and long term

* what can be done to prevent or minimize those side effects, should they occur

* other treatment options, such as (1) a different but equally effective chemotherapy drug whose side effects may better meet your needs (for example, less hair loss or a reduced chance of numbness in the hands and feet, called peripheral neuropathy), and (2) a different sequence of chemotherapy, radiation, or surgery than is being proposed and the merits of the different approaches

* if a clinical trial (research study) testing new ways to treat the cancer is available and the pros and cons of participating in the study

* what the strategy might be if the first therapy does not control the cancer

* whether a second opinion is advisable (initially or at a future time)

* how the treatment costs will be covered

* a review of the medications, vitamins, and supplements you may already be taking

* where to find counseling and support groups to help you and your loved ones cope with the many emotional and life challenges posed by cancer

These essential topics are covered in later chapters. First I wish to focus on the disease itself and answer the deceptively simple question, "What is cancer?"

Alice's story provides one answer: All of the above is cancer. Cancer is all the physical and emotional upheaval that a person's body and mind must endure in response to an "invasion from within" of bizarre collections of cells that form troubling growths called tumors. From a medical point of view, cancer can be defined another way:

What is Cancer? Cancer is a disease caused by the growth and spread in our bodies of cells that do not know how to die.

The Three Essential Properties of Cancer

All cancers begin with the conversion of one cell from a normal state into a cancerous state. During this process, which in most cases takes many years, the changing cell acquires three main properties that distinguish it as a cancer cell. These three essential properties are the defining characteristics of the disease. Normal cells have none of these properties. The three properties are:

1. An unlimited capacity for growth

2. An inability to die

3. An ability to spread (from the site of origin)

To know these properties is to appreciate the very nature of cancer. They define how well a cancer grows and survives in the body, and they largely determine how curable any particular cancer is. It is extremely important to realize, however, that the power and extent of each property is different for each cancer. Some cancers grow slowly, others quickly; some have a great capacity to spread throughout the body, others a more limited ability to do so. Just as every person is unique, so is every cancer. This is why I caution patients that the information they receive about other people with cancer will probably not relate to their case.

AN UNLIMITED CAPACITY FOR GROWTH

The growth of cancer is very much on the minds of all those affected by this disease: patients, physicians, and researchers.

When a cancer patient wonders how long it has been from the time his or her cancer first started to when it was diagnosed, he or she is asking about the growth rate of the cancer. Another way to phrase this question is: "How fast is the cancer growing?" When a patient asks if the cancer is in "remission," he or she is really asking if the cancer has stopped growing and, more to the point, started to shrink. On the other hand, if the patient is told that the cancer has "relapsed," then it means the cancer is growing again.

The Meaning of Remission. There are two main types of remission: partial or complete. In a partial remission, the cancer shrinks in size by at least 30 percent; in a complete remission, the cancer becomes undetectable. In the past, cancer doctors and researchers believed that only treatments that achieved remission could benefit patients. However, some newer cancer treatments, called targeted therapies (discussed in chapters 6 and 7), not only improve quality of life but prolong life merely by "freezing" or stabilizing the growth of cancer (without necessarily shrinking tumors); this has led to a new mindset about the goals of therapy. Especially for cancers that are not considered curable, prolonged stabilization of the cancer can be as worthy a goal as obtaining remission.

Oncologists (physicians with advanced training and certification in the medical care of people with cancer) have the same concerns as patients, but with a focus on how the health of their patients is or will be affected by cancer growth. For each patient, oncologists weigh several factors to assess and anticipate the growth potential of a cancer. These include: (1) examining the pathology report, which can indicate the aggressiveness of the cancer and its potential to return after treatment; (2) determining how rapidly any symptoms caused by the disease have developed; and (3) assessing the extent of the cancer as determined by imaging tests (CT scans, MRIs, bone scans, and PET scans) and blood tests.

Some types of cancer generate a protein, called a "tumor marker," that is released into the bloodstream and can be measured through a simple blood test. Although very elevated tumor marker levels often indicate an aggressive cancer, these tests are conducted primarily to track the progress of treatment (as a cancer is successfully treated, its tumor marker will fall). The main tumor markers are:

Major cancer tumor markers (blood tests)

Tumor marker Cancer

AFP, HCG testicular, liver (AFP only) CEA colorectal CA 15-3, CA 27-29 breast CA 19-9 pancreatic, biliary tract CA-125 ovarian PSA prostate M-protein; free light chains multiple myeloma LDH lymphoma Beta-2 microglobulin myeloma, lymphoma

Oncologists process all this information to determine if a cancer is fast or slow growing and if it has a high or low potential to spread to other organs. Oncologists must see the full cancer landscape for each patient, that which the affected person could not possibly see. Following these assessments, the oncologist makes recommendations as to whether treatment should be started urgently (the same day) or in the near term (in a few days or weeks), or whether treatment can be deferred based on the future behavior of the cancer (that is, no treatment is necessary at present). For example, a person who experiences sudden back pain and is found to have a rapidly growing tumor that is pressing on the spinal cord requires urgent treatment to alleviate pain and prevent paralysis. In contrast, a seventy-five-year-old man with a slow-growing prostate cancer that is not causing any symptoms may never need the cancer treated. All of these clinical lines of thought revolve around the growth properties of the cancer in question. For each patient, the growth assessment of the cancer is best understood through discussions with the oncologist.

Cancer researchers are also focused on growth as they work to discover new and better ways of treating cancer. Scientists study the molecules inside cancer cells that stimulate them to multiply and grow. By understanding how these important molecules work, researchers can develop drugs that will block them from functioning. The hope is that interfering with these critical targets will cause the cancer cells to die. These growth targets and the drugs designed to block them are discussed later.

We've established that growth is central to thinking about cancer. But what does it mean for cancer to grow, and to grow in an unlimited way? What actually is growing? The answer is the number of cancer cells. All cancers start with one cell, and that cell multiplies to form the tumors that are ultimately detected. One cell becomes two cells. These two cells then duplicate themselves to become four cells, which multiply to eight cells, and so on, until there is an entire population of cells (fig. 1).

It is generally thought that one billion cancer cells need to have formed before a cancer can be detected. This is the number of cells present in a one-centimeter tumor (nearly a third of an inch). The ability to detect cancer when far fewer cells are present is a high priority of cancer research.

While the growth of cancer cells is certainly a bad thing, the growth of healthy cells is of course, necessary for our bodies to function properly. The difference between normal cell growth and cancer cell growth is that normal growth is always precisely timed and controlled. For example, when a human fetus is developing, cell growth is explosive because one fertilized egg must give rise to the trillions of cells that ultimately compose a body. Yet the process of making the heart, brain, or any other organ is tightly regulated: cells stop growing once the correct organ pattern is laid down. In fact, when an organ reaches maturity, most of its cells lose the capacity to multiply. This is why our heart cannot replace damaged cardiac muscle after a heart attack and why our bodies cannot heal a spinal cord injury by making new nerve tissue.

Mature adult organs have a limited capacity to regenerate, with the exception of the liver, the inner lining of the intestines, and the bone marrow. Fetal tissue, on the other hand, has the full capacity to form new cells, which is why fetal stem cells (the cells with the greatest regenerative capacity) are being studied as a way to help victims of numerous illnesses and injuries, such as Parkinson's disease and spinal cord damage. The hope is that if fetal stem cells are implanted in an environment of nerves, for example, they will sprout new nerve cells to replace the damaged ones.

(Continues...)

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Excerpted from Fighting Cancer with Knowledge & Hope by RICHARD C. FRANK Copyright © 2009 by Richard C. Frank. Excerpted by permission.
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