Excerpt from Chapter 1:
New Information That Could
Save Your Life

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Lung Cancer: Myths, Facts, Choices – and Hope by Claudia I. Henschke, Ph.D., M.D., and Peggy McCarthy with Sarah Wernick (W.W. Norton, 2003) Order from Amazon.com

Michael is a vigorous man in his late 50s who looks about a decade younger. He's just had a CT scan at New York Hospital, where I am chief of the Division of Chest Imaging. This painless twenty-second scan could save his life – and it could save as many as 100,000 lives every year in the United States alone.

A CT scan (also called a CAT scan) is similar to an x-ray, but it reveals a great deal more. My research, conducted with colleagues at Cornell University and New York University, has shown that a CT scan can find lung cancer before the patient has any symptoms, while the disease is still treatable and – yes – curable. Michael read about our research in the New York Times. Both his parents died young, and Michael is vigilant about his health. He called my office for an appointment.

The test is quick and simple. Michael lay down on the scanning table. He took a deep breath and held it. Silently, the table glided through the scanning doughnut – a vertical ring about as big as a tractor tire. Before he exhaled, the device had already created detailed images of his lungs.

Now Michael is in my office waiting for the results. He has no symptoms of any illness, let alone a deadly disease like lung cancer. I know from his medical folder that he watches his diet. Most mornings he jogs before work. But years ago, starting in his early teens, Michael smoked more than a pack a day. He quit in his mid-40s, shortly after his father's fatal heart attack. Unfortunately, damage may remain, even all these years later, and that concerns me.

When I bring up images of his lungs on my computer screen, I see something I don't want to see. The large oval on the right – his left lung – is black, as it's supposed to be. But on the bottom of the left oval is an ominous irregularly shaped shadow of gray. Such a shadow may be caused by the inflammation and excess fluid of pneumonia. I hope that's what it is.

I question Michael about possible symptoms: “Have you had any fever or chills in the past few weeks?”

“No,” he responds eagerly. “I've been feeling great.” My heart sinks. That's the wrong answer. How I wish I could tell Michael that everything is fine, or even that he has pneumonia. Though pneumonia can be serious, usually we can cure it with antibiotics. Instead, I must break the news that he needs further tests and that he could have lung cancer.

Lung cancer is one of medicine's most dreaded diagnoses. The current five-year survival rate is only 14 percent. It's the leading cancer killer, by a wide margin. According to American Cancer Society statistics, the disease will claim about 157,000 lives this year in the United States. That's 28 percent of all deaths from cancer, more than the toll from colon cancer, prostate cancer, and breast cancer put together. But now there's hope that lung cancer's terrifying statistics can change.

Ordinarily, a lung cancer tumor isn't discovered until it causes symptoms. By then, the tumor usually is about the size of a small orange and the cancer probably has already spread. An x-ray can reveal a grape-size lump. But a CT scan can find tiny tumors no bigger than a grain of rice. When lung cancer is found and treated early, five-year survival rates soar from a dismal 14 percent to 70 percent or even higher. We believe that when the promise of early detection becomes a widespread reality, annual lung cancer deaths could be cut in half. When that happens, the total number of cancer deaths also will drop significantly. Indeed, early detection of lung cancer promises to have a greater impact on the war against cancer than any other single factor on the horizon.

The study that Michael read about followed 1,000 smokers and ex-smokers. We checked their lungs with chest x-rays and CT scans. In this initial screening, CT found twenty-seven tumors, twenty-three of which were still at an early stage. X rays identified only four of these early cancers. Our findings were published in the British medical journal Lancet in 1999, and made headlines worldwide.

Michael will need several additional tests to determine if the shadows on his CT scan are lung cancer. If so, he can be greatly encouraged by the fact that it was discovered so early. His chances for a full recovery are excellent.

Deadly Myths about Lung Cancer

CT scans can transform the prognosis for men and women at risk for lung cancer. But they are not enough. People are distressingly ignorant about this disease—and what they don't know could kill them.

Myth #1: Only smokers are at risk.

Myth #2: If you smoke, the damage is done,
so there's no point quitting.

FACT: Your body has a remarkable ability to repair itself. Even if you've smoked for decades, your immune system has a chance to correct some of the damage if you stop now. Moreover, you'll prevent further harm. A University of California researcher who reviewed the statistics found that smokers who quit after age 70 lived longer than those who kept on puffing. Quitting helps even if you already have lung cancer: you will respond better to treatment and reduce the odds that cancer will reappear. And of course you'll also reduce your risk of heart disease and other smoking-related illnesses.

Myth #3: Women need not worry about lung cancer.

FACT: Lung cancer is by far the leading cancer killer of women. According to American Cancer Society statistics, each year nearly 70,000 women will die from lung cancer in the United States—about 28,000 more than will die of breast cancer. Tracy, a lifelong non-smoker, was diagnosed at age 33. She recalls:

I had a funny coworker who made me laugh a lot. I noticed that my laugh felt different and sounded different—it had a crackly, rattly sound. I went to my doctor to check it out and she referred me to a lung specialist. I was given an x-ray and a CT scan. At first they assumed I had pneumonia, and I was treated with antibiotics. But after a month, there was no improvement. Then they thought it might be a fungal infection.

Finally, Tracy had a bronchoscopy, a test in which the lungs are examined directly. She returned to the lung specialist to get the results:

This doctor is a wonderful, sympathetic person. I was sitting in his office with my two-year-old daughter crawling all over my lap while he read the report. His mouth fell wide open. He told me that I had cancer, and I could tell he was shocked.

Myth #4: The first sign of lung cancer is coughing up blood.

FACT: Coughing up blood is the lung cancer symptom we've all heard about. Though this may happen as the disease progresses, it's rarely the first signal that something is wrong. More common early symptoms are breathlessness and fatigue. Joyce realized only later – after she was diagnosed with lung cancer at age 56 – that she and her doctor had missed several significant signs:

I was exhausted. But I was working full-time as a social worker and moonlighting one or two weekend days each month. My first thought was: I don't need that second job. Also, I would be awakened with pain in my chest and down my left arm. I assumed it was my heart. My internist checked me and said, “Your heart is fine. You must have pulled a muscle.”

Finally, a colleague gave her a pointed warning that sent her back to the doctor for a more thorough checkup:

We had walked up a flight of stairs. She said to me, “Joyce, you need to go to the doctor. You're slender and work out, but you're short of breath. I'm overweight and out of shape, but I'm not huffing and puffing.”

Myth #5: If you're diagnosed with lung cancer,
the situation is hopeless.

FACT: Lung cancer is one of the most undertreated cancers because many patients—and even doctors—don't realize that treatment is helpful at any stage. Even if the disease has advanced, treatment can relieve symptoms, improve the quality of life, and extend life. All too many lung cancer patients are told, “Nothing can be done.” This is almost never true. Glenn recalls:

The oncologist on call came to me and said, “The diagnosis is confirmed; it is lung cancer.” He was wearing a dark blue suit. When he said this, he held his hands in front of him and turned his head down. I could only liken it to a funeral director trying to be sensitive to the family. I asked him, “Isn't there anything you can do?” He said, “There's nothing we can do.” My wife took over. Everyone should have an advocate like my wife. It's because of her that I'm alive today. I was saying, “I'm going to die,” but she was saying, “No, we're going to beat this thing.” She got rid of the funeral director doctor and found a physician who said, “You're a young man. I'll do everything I can to save you.

How This Book Can Help

I want to introduce my coauthor, Peggy McCarthy. Peggy is the founder of the only nonprofit organization operating internationally that is devoted solely to helping people at risk for and living with lung cancer: the Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE). Through ALCASE's telephone hotline, conferences, and other programs, Peggy has met thousands of lung cancer patients. We've written most chapters of this book together, but some specialized ones separately. You'll also hear from lung cancer survivors who share their experiences and their hard-won expertise.

Here's what this book provides:

A Blame-Free Approach to Smokers

Lung cancer patients often meet with condemnation instead of compassion. Sometimes they're tormented by self-criticism. We want to clear the air about guilt, right from the start. Peggy—a former smoker herself—tackles this issue forcefully in Chapter 2.

Basic Information about the Lungs and Cancer

Your lungs bring life-giving oxygen into your body. We'll explain how they work and list simple signs—such as needing extra pillows at night—that could reveal a hidden respiratory problem. We'll also describe how cancer develops and how the body's immune system fights back. You'll gain a deeper understanding of the latest approaches to cancer treatment, such as anti-angiogenesis drugs that kill tumors by cutting off their blood supply.

Lifesaving News about Early Detection

I will give you the very latest information about CT screening and other techniques for early diagnosis. You'll find out if you need to be screened; I'll tell you where to go for testing and what to expect.

I went to my doctor because I was experiencing severe abdominal cramps. He sent me for a CT scan of the abdomen and pelvis. After the scan, the radiologist had a strange look on his face. He said, “Nothing is wrong,” but it was clear from his face that something was wrong. He wanted to take a CTscan of my chest. I'm thinking: What does that have to do with my abdomen? I returned to my doctor to follow up. I had an acute case of constipation, which explained the cramps. But there was a small nodule on my left lung, which turned out to be malignant. I was very lucky. Because the cancer happened to be at the very bottom of my lung, it could be seen on the CT scan of my abdomen. The doctors said my stomachache saved my life.
—Estrea

Risk Factors and How to Beat Them

Smoking is by far the leading cause of lung cancer. And it's not just ordinary cigarettes. You'll learn about the risks of cigars, marijuana, and the exotic cigarettes—bidis and kreteks—that have become alarmingly popular among teenagers. If you smoke, Peggy has encouraging news: new approaches make it a lot easier to give up cigarettes without gaining weight. Other factors play a role in lung cancer too. We'll help you assess—and minimize—your other risks, including environmental and workplace carcinogens. We'll also suggest ways to boost your immune system. You'll learn about current research on vitamins that seem to protect against the disease.

The Best Diagnostic Strategies

My group at Cornell, along with other teams from leading cancer centers throughout North America, Europe, and Asia, are conducting additional clinical studies on early detection of lung cancer by CT scan. We expect this test soon will be as routine for lung cancer as are tests for early detection of breast, cervical, colorectal, and prostate cancers. But until that happens, most lung cancers will be discovered only when symptoms appear. You need to know about the seemingly minor changes that could signal lung cancer. We'll provide essential information about diagnostic tests, with important suggestions for avoiding unnecessary invasive procedures.

How to Find the Right Doctors

Peggy offers supportive advice for those first days and weeks when you're struggling to cope with the diagnosis and sharing the news with loved ones. There's much you can do for yourself, even before treatment begins. We have valuable tips on researching your disease, with a step-by-step guide to tapping online resources. We'll also tell you how to assemble a first-rate medical team and how to work effectively with your doctors.

The Latest on Treatment

This book presents up-to-the-minute information about lung cancer surgery, radiation therapy, and chemotherapy—with glimpses at promising new approaches still under investigation. Peggy offers many patient-tested suggestions for making treatment more tolerable.

• • •

I tell everyone: Don't be afraid of chemotherapy. The enemy is the cancer, not the chemo. It's not like it was twenty years ago. We've all thrown up, been constipated, suffered diarrhea. You won't experience anything you haven't experienced from some other cause.
—Anita

Lung cancer therapy is advancing rapidly. We'll tell you how to join research projects that are testing the treatments of the future. The chapter on complementary and alternative options will help you sort through the possibilities to find measures that are truly helpful.

Advice on Living Well with Lung Cancer

This book addresses the emotional and practical concerns of survivors who wonder: Will my cancer return? We'll explain what tests you need to monitor your health after treatment is over. Lung cancer and its treatments can produce difficult symptoms. But we'll tell you how to remain as healthy, active, and pain-free as possible. We'll also discuss the practicalities, including how to get what you're entitled to from your insurance company or HMO. If you have lung cancer, you know that your disease affects your loved ones too. The book includes a chapter from Peggy just for caregivers.

In the final chapter Peggy offers practical and compassionate assistance for people facing limited time. It's never too late for hope, for joy, and for meaningful accomplishments. For John, there's hope that an experimental drug will shrink the tumors that didn't respond to previous chemotherapy. Meanwhile, he's planning for the future:

I had a health care proxy done; I've arranged to go to a hospice when the time comes that I can't do for myself. I think anyone over forty-five should have these things in order. When you're handed a terminal diagnosis, getting things squared away frees you to add to the quality of your life. I went back to college. I'm also getting my first art show together, and I'm looking forward to that.

The lung cancer epidemic has been a silent one. Celebrities haven't staged lavish benefit concerts; patients haven't marched on Washington to demand a cure. This is the cancer that no one talks about. We wrote this book to break the silence and explode the myths-and to offer hope to everyone affected by this terrible disease.