The first thing that some patients (or their loved ones) think when they are told that they have cancer is that they might die soon. This is natural. In fact, few people die of cancer soon after they are diagnosed, although rapidly fatal cancers can occur. More people are living longer with cancer than ever before, and a cornucopia of new drugs being tested today offers real hope to cancer patients. Statistics on all persons diagnosed with cancer in the United States from 1990 to 1999 indicate that 63 percent survived at least five years (many are presumed cured). Still, not enough people do survive cancer for long enough, and we cannot escape the present-day reality that cancer claims far too many lives. Therefore, the first question that many (but not all) people with cancer ask of their oncologists is, What is the prognosis?" In considering the prognosis, you and your oncologist should address two central questions: First, is there a reasonable expectation for cure? And second, if the cancer is not considered curable, what is the estimated survival?
It is vital for patients and their loved ones to have a clear understanding of whether the cancer they are confronting is likely to be cured. Some cancers are cured with surgery or radiation alone; others require chemotherapy; still others, such as the blood and lymph cancers, may require a stem-cell transplant to achieve cure. If the cancer is potentially curable, then you will need to discuss the recommended treatments, their side effects, and how treatment will affect all facets of your life. If cure is not a likely possibility, then you will need to discuss all of the above plus another crucial element: the goals of treatment. Is long-term disease control a realistic goal? Is short-term comfort and relief of suffering a more appropriate objective? Will a goal intermediate between these two be more achievable?
The type of cancer, stage of the cancer, medical condition of the patient, and the effectiveness of available treatments are critical determinants of a cancer's curability. Oncologists weigh these plus a number of other factors in estimating prognosis (these are discussed below, in the section titled The Five Elements of Prognosis"). Before we explore how doctors estimate prognosis, it is important to understand what is meant by incurable cancer."
As might be expected of all good accountants, Mitch W. walked into my office, greeted me cordially, sat down, opened a notebook, took pen in hand, and prepared to discuss the facts." The facts, however, were not a client's tax returns but rather Mitch's returns after meeting with a renowned surgeon in search of a radical cure for his newly diagnosed cancer.
One month before our meeting, Mitch developed sudden abdominal pain and turned yellow, the sign of jaundice, indicating trouble in the flow of bile through the bile ducts. He was admitted to our hospital, where testing showed gallstones both in his gallbladder and lodged in the common bile duct, the main river of bile flow. Gastroenterologists relieved the obstruction in the duct with a stent, and he was soon off for routine surgery to remove his gallbladder. Immediately on viewing the gallbladder, however, the surgeon could tell that it was very abnormal. Frozen section (pathology done on the spot in the operating room) showed cancer. Suspicious areas in the liver and in nearby lymph nodes showed the same. The gallbladder was removed, but Mitch awoke to devastating news.
You should have this information the scans, pathology report, and recent surgeon's notes," he told me. The place was huge, impressive. The surgeon was a very nice fellow. They ran some extra tests but turned me down for an operation." He stopped for a few moments, then resumed. The cancer's too extensive. He gave me six months and told me that I should get my affairs in order. He also said that I should find an oncologist and try some chemotherapy." He successfully choked back the emotions welling up inside him and continued. Well, my affairs have always been in order. So, here I am. I must tell you that I feel great, just took my boat out for four days . . . I'm having a very hard time believing I won't be here in six months. What do you think?" Sometimes I think to myself in these situations, Why am I here? Who could receive such a penetrating gaze from a fellow human?" In this case my first thought was, How can a person be so strong, so calm in the face of his own mortality? Why should this exceptional person or anyone for that matter have to confront a deadly cancer?" But as usual, I had no answers to my questions and had to focus on the person who sought my help; I was to propose a battle plan with very inadequate weapons to combat this enemy. Mitch's strength made my job easier, and I was grateful for that. I agree with you that six months seems grim. The average survival for stage IV gallbladder cancer is on the order of twelve months, and some patients can live substantially longer. A lot will depend on the aggressiveness of the cancer and how it responds to treatment."
Mitch began chemotherapy with a drug called gemcitabine (Gemzar), and his cancer responded surprisingly well. An MRI showed that the liver metastases were shrinking; a tumor marker named CA 19-9, measured from a blood sample, declined from 5,000 to 200 (the lower the better, normal is less than 35). After a year of nearly weekly chemotherapy treatments, he was able to stop them and enter a period of observation; his cancer was detectable but not growing. Unfortunately, soon afterward, his CA 19-9 level began to climb. Although he continued to feel well, he had to endure the mental grind of the rising marker" (see below), first to 400, then 600, and eventually to 1,400. When it reached that level, Mitch looked at me with his head bent down, eyes peering over his glasses, and said, Maybe it's time to get back to chemo." During his visits, we talked about his health, our lives, and the lives of our loved ones. The physicians' offices at our cancer center are decorated with the pictures of our families, so patients become familiar with the lives of their oncologists. By this time, Mitch and I had come to know each other's body language and facial expressions. I knew he was no longer comfortable waiting.
He began a different chemotherapy concoction, capecitabine (Xeloda) and oxaliplatin (referred to as Xelox). Miraculously (to me!), the marker began to fall, reaching the 100 range; MRI confirmed the evolving remission. After eight months of treatment, his hands and feet were becoming uncomfortably numb, so therapy was halted. Still, Mitch was ever pleasant, rolling with the tides of his cancer as any good sailor would. Not surprisingly, however, the CA 19-9 began to rise as soon as therapy ceased. Over the course of a year without treatment, while under close monitoring of his symptoms and the status of his cancer by CT scans and MRIs, the marker rose to over 10,000. He squirmed in his chair with each visit, huffed and smiled, and said, Now what?" To me, he seemed too well for such a high marker, even though the scans suggested that the cancer was slowly worsening. Why don't we just start in again?" I asked myself. The truth was, I didn't know what we would use to treat his cancer, because there are no reports of third-line (or second-line, for that matter) regimens for this disease. We were in uncharted territory. I recommended that we find an appropriate clinical trial for him, testing an investigational anticancer drug; he preferred to pursue that at a later time. He appeared so well and I had such reluctance to submit him again to the side effects of chemotherapy that I recommended surgery just to prove that what we were seeing on the scans was active cancer. It did; my foray into magical thinking" flopped. During this time, Mitch never lost his composure, never lost his sense of gratitude, never stopped boating, working, or helping other people. And he has never stopped being an inspiration to me and all those who know him.
Eventually, weight loss and other mild symptoms began to creep in and force my hand. We went back to gemcitabine and added Tarceva, a pill that is FDA approved for pancreatic cancer but has modest benefits in the eyes of most oncologists for that related cancer. Again to my amazement, the marker began to fall precipitously, back into the low hundreds. After he underwent an MRI of the abdomen, I received a call from the radiologist, which is never a good thing. Dr. Klein's on the phone, he wants to talk to you about Mr. W's MRI," said my medical assistant, Tammy. Oh, great," I thought to myself with trepidation, I really don't want to take this call!" Rich, what's going on with Mr. W?" asked Dr. Klein. My heart was pounding as I replied, Where are you going with this? How can you be calling me with bad news? His marker is down and he feels well." I was not being an objective" physician; I wanted to will a certain result from his mouth. That's what I wanted to know," he said. The cancer looks much better. How is this possible?" I really don't know," I said, but you made my day!" Amazingly, Mitch has survived five years and is still going strong. To be honest, patients like him keep us oncologists going.
It is, of course, devastating to learn that you or a loved one has a cancer that is not considered curable. Yet such a diagnosis does not mean that the cancer is not treatable (it nearly always is) or that the affected person may not live for many years, as in the case of Mitch. On the other hand, six months" can sometimes be even less than that in the face of a relentless cancer that proves resistant to all known treatments. Everyone reacts differently when diagnosed with a cancer that is not likely to be cured. Some people want to hear all the facts so that they can prepare for all possible outcomes. Others may not want to discuss the prognosis immediately and would rather wait for a time that enables them to face their situation or steel themselves to begin treatment; for some, coping means taking one step at a time. Still others do not want to talk about prognosis or hear bad news at all. Each patient's wish must be respected.
When talking with a patient who has just been diagnosed with a cancer that carries a poor prognosis, the oncologist's goal is not to be brutally honest, to give" someone a certain amount of time to live, or to take away hope. Rather, the point is to get the doctor, patient, and family on the same page," understanding the reality of the situation but maintaining enough hope and optimism to strive for the best possible outcome.
Patients should be able to convey to their caregivers their feelings, fears, and needs (physical, practical, and emotional). They should, in time, come to believe that that their oncologist will fight tooth and nail for their survival and quality of life. Every means necessary should be employed to cope with this difficult situation. Psychiatrists, social workers, family therapists, nurses, spiritual advisers, and other professionals play critical roles in helping patients and their loved ones adjust to their new reality. If these caring professionals don't come to you, seek them out!
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