The Silent Killer

This article – winner of the American Medical Association's President's Prize for excellence in tobacco reporting – was published in Ladies' Home Journal in September, 1997. It was the first feature article about lung cancer to be published in a major women's magazine.

• Postscript and tribute to Donna Purple, who is profiled in the Ladies' Home Journal story
• Information about Lung Cancer: Myths, Facts, Choices – and Hope, a book for people with lung cancer and their loved ones
• Online resources for additional information about lung cancer

A shocking diagnosis

Donna Purple, 36 and to all appearances in excellent health, had never smoked. So she was more puzzled than worried about the dry cough that lingered through the late June vacation she’d enjoyed with her husband, Jon, and their 10-year-old daughter, Jessica. Though she’d also been short of breath on the tennis court, she figured she was just out of shape. Still, Donna called her doctor when they returned to their Cedarville, Ohio home.

After hearing the symptoms and listening to her chest, the doctor suspected asthma. But he suggested an x-ray to make sure.

Even without medical training, Donna could see the difference between her two lungs on the film: behind the horizontal stripes of her ribs, the left side was clear; but the right side was clouded with white. The doctor said, “You have fluid on your right lung – that’s a symptom. I think this is the cause.” He pointed to an irregular white circle about the size of a dime. “It’s a tumor,” he said.

“I was terrified,” Donna says. Her fear intensified as the doctor called a nearby hospital to arrange a CAT scan. “Find an opening,” he insisted. “We need to fit her in today.”

“My mind was going 100 miles an hour,” Donna recalls. “I kept telling myself it couldn’t be cancer.” En route to the hospital, she picked up Jon at his office.

After the CAT scan, they went home to wait near the telephone. It was July 1, 1994, the Friday before the holiday weekend. Donna had gone to her doctor that morning expecting to be sent home with an antibiotic prescription. Instead, at four in the afternoon, she learned she had lung cancer.

The CAT scan showed many tumors in her right lung, not just the one visible on the x-ray, the doctor told her. He referred her to a surgeon – she’d need further tests to plan treatment.

Stunned by the news, Donna managed to keep her emotions in check and dialed the surgeon’s number. The first opening, the nurse told her, was in two weeks. “That’s when I lost it,” says Donna. “I started crying. I said, ‘You don’t understand. I just found out I have cancer.’” The nurse gave her an appointment for the following Wednesday. Donna says, “I got off the phone and I cried and cried and cried.”

Over the long weekend, Donna and Jon struggled with horror and disbelief. “All those one-word questions were running through our minds: How? Why?” says Donna. “You think people who get lung cancer must have smoked or worked around asbestos or hazardous chemicals. And none of that fit me.”

The diagnosis baffled her doctors too. Not only did Donna have no known risk factor for the disease, fewer than one lung cancer patient in 100 is as young as she is. Two years later, she still has no explanation.

Women’s deadliest cancer

Lung cancer is now the number one cancer killer of women. This year 44,300 American women will die from breast cancer, according to the latest American Cancer Society statistics. But lung cancer will claim a shocking 64,300. Over the past three decades, while the toll from uterine and ovarian cancer dropped, and breast cancer fatalities rose a modest 7 percent, women's lung cancer deaths soared by over 450 percent, surpassing breast cancer in 1987. Late in 1996, when the National Cancer Institute announced that deaths from cancer were declining for the first time in 60 years, and that men’s lung cancer mortality had fallen, an unhappy exception to the good news was a 6.4 percent increase in lung cancer deaths among women.

This deadly epidemic has drawn astonishingly little attention. “There are no colored ribbons for lung cancer survivors, no fundraising benefits or races for a cure; there are no lung cancer awareness days. In fact, lung cancer is one of the least talked-about types of cancer,” points out Susan McCarthy, program manager for the Alliance for Lung Cancer Advocacy, Support and Education, a Vancouver, Washington-based organization for people with lung cancer. [This organization is now called the Lung Cancer Alliance, and is based in Washington D.C.] Because of the silence, most women are unaware of the risk.

No form of cancer frustrates doctors more than this one. Lung cancer, unlike others, is usually preventable. What’s more, the disease develops over many years and can be cured if it’s found early. But lung cancer is a stealthy killer, and rarely displays symptoms until it has taken hold. The tragic consequence: Only 13 percent of lung cancer patients survive five years or more.

Despite the dismal statistics, there is hope. Simple measures can reduce the risk (even for smokers); earlier detection may be possible; and new therapies are getting better results.

How lung cancer develops

Every breath we take is drawn into our two lungs. Their vital responsibility is to transfer oxygen into our blood stream, at the same time removing carbon dioxide. Inside the chest, the lungs resemble an upside-down tree. Air travels down the trachea (windpipe) into the two bronchi (air passages), which lead to the left and right lungs. The main bronchi subdivide like branches into bronchioles, which end in clusters of tiny air sacs – the alveoli – where the lungs do the actual work of transferring oxygen and carbon dioxide. The average lung has more than 300 million alveoli.

Our breathing passages have built-in protective mechanisms: irritating particles are trapped by mucus and swept out of the airways by microscopic hair-like cilia; as these cells wear out, they’re replaced by new tissue. But the lungs’ defenses can be overwhelmed by frequent exposure to pollutants over many years. New growth may be abnormal, and eventually become cancerous. The process is very slow. “We think it takes ten to fifteen years from the time the first cancerous cell starts growing abnormally until it reaches a point where it can be detected,” says Deborah Shure, MD, President of the American College of Chest Physicians. In the meantime, the disease often spreads via the lungs’ extensive network of blood and lymph vessels.

The causes – cigarettes and more

Cigarettes, of course, are the chief culprit. Tobacco smoke contains at least 43 known carcinogens – including tar, benzene, formaldehyde, and nitrosamines. New evidence suggests that women may be especially vulnerable to their harmful effects. Harvard scientists, who recently reported that smoking stunts lung development in teenagers of both sexes, discovered the damage was worse for girls. And a startling study published in the February 21, 1996 issue of the Journal of the National Cancer Institute found that at every level of exposure, the risk of developing lung cancer was 1.2 to 1.7 times higher for women than for men.

“People were surprised, but we used detailed information about smoking to determine exposure,” says Edith A. Zang, PhD, co-author of the report. It turned out that women typically begin smoking later than men do and they use brands lower in tar; they smoke fewer cigarettes than men on average and inhale less deeply. When Zang and her colleagues took all these differences into account, the gender gap was striking.

How to explain it? Some evidence points to estrogen. “Sex hormones are known to influence activity of the P-450 enzymes in the liver that break down toxins, including certain tobacco carcinogens,” says Zang. Smokers who also take hormone replacement therapy have a higher risk of lung cancer than other smokers. Estrogen also might explain the link found in population studies between a high fat diet and increased lung cancer risk, since heavier women produce more estrogen. “All this is only hypothesis,” emphasizes Zang, who continues to gather data for further studies.

Though smoking is by far the most significant cause of lung cancer, approximately 20 percent of women with lung cancer never smoked. Other risk factors include:

Passive smoking

An estimated 3,000 non-smokers per year get lung cancer because they're exposed to other people's tobacco smoke at home or at work. According to a 1994 study published in the Journal of the American Medical Association, women who don't smoke themselves, but whose husbands do, have a 30 percent higher-than-normal incidence of the disease. The thicker the cloud, the greater the risk.

Radon

This radioactive gas occurs naturally in soil. Outdoors, it’s harmless, but radon – which is colorless and odorless – can seep into enclosed areas and accumulate to dangerous levels. Miners exposed to radon have much higher-than-expected rates of lung cancer. Radon also can accumulate in poorly ventilated basements, but researchers haven’t found a consistent connection between residential exposure and lung cancer. According to the National Cancer Institute, radon is a factor in approximately 17,000 lung cancer deaths annually. Though some experts dispute that figure as inflated, there’s no question that corrective action is needed when homes have very high radon levels.

Radiation exposure

Not only occupational exposure but – ironically – radiation therapy for other forms of cancer can increase lung cancer risk. In a 1993 study published in Cancer, which followed more than 56,000 breast cancer patients, those who received radiation were two to three times more likely to develop lung cancer later on. Important notes: This threat does not outweigh the benefits of treatment, and the minimal radiation of mammography poses no risk.

Industrial hazards

Exposure to carcinogens at work – including asbestos, nickel, chromates and vinyl chloride – increases the odds of getting lung cancer, especially for smokers. A 1996 review by researchers at the National Institute for Occupational Safety and Health estimated that 900 to 1900 American women develop lung cancer each year as a result of occupational exposure.

Marijuana

Doctors from the University of Miami have reported an alarming connection between marijuana smoking and lung cancer. When they interviewed 13 lung cancer patients who had been diagnosed before age 45 – atypically young for this disease – every single one of them reported using marijuana as well as tobacco.

Heredity

Non-smoking relatives of lung cancer patients have two to three times the usual risk of developing the disease. Dr. Shure explains: “They may inherit a defect in the enzyme system that protects the body from carcinogens – and it could be that they're exposed to second-hand smoke.”

Some cases defy explanation. Donna Purple was never exposed to significant second-hand smoke at home or on the job (before her illness, she taught eighth-grade English). There’s no history of the disease in her family, no other risk factor to explain it. Donna and Jon, searching for answers, even placed radon detectors in their previous home, but the levels were safely below normal. “It’s so frustrating,” she says; “I have no idea what I could have done differently.”

Warning signs

The earliest symptoms of lung cancer are easily missed because they’re so commonplace, so easy to blame on a virus or lack of exercise. Women – particularly current or ex-smokers – should be alert to these problems if they persist for a week or two without obvious reason:

“Specific symptoms depend on the location of the disease,” explains Dr. Shure. A cancerous tumor in an airway can cause coughing or difficulty breathing. If a growth is pressing against the ribs, chest pain could be the first indication. Or a woman might feel a flu-like malaise that’s caused by the chemicals a cancerous growth secretes. “If the cancer has spread to the bones, there might be pain in the back, neck or legs; if it’s reached the brain, symptoms could be confusion or forgetfulness,” Dr. Shure adds.

Diagnosis is confirmed by a series of tests, usually starting with non-invasive procedures, such as chest x-ray or sputum cytology (microscopic analysis of coughed-up material ). Follow-up might include bronchoscopy (insertion of a flexible viewing tube into the lungs through the nose or throat), needle biopsy or surgery to examine a suspicious area. Doctors check the entire chest, the bones, the liver and the brain to determine if the disease has spread. Additional tests may include blood tests, CAT scans, MRIs, or radionuclide scans, in which a small amount of radioactive material that can only be absorbed by cancer cells is injected into a vein, so any cancerous areas can be detected.

Treatment

If lung cancer is caught early, when it’s still localized, a cure is possible. But because early lung cancer produces no symptoms, only 15 percent of cases are discovered at that stage. Thus most newly-diagnosed patients face grim news.

Two decades ago, the one-year survival rate for lung cancer patients was 32 percent, according to the American Cancer Society. Today, the number has inched up to 41 percent. “We're not hitting any home runs,” admits James R. Jett, MD, of the Pittsburgh Cancer Institute. Nevertheless, even small advances mean longer, more comfortable lives for people with lung cancer.

Surgery

Removal of the tumor, along with all or part of the affected lung, offers the best odds of cure. However, surgery often isn't feasible: Sometimes the disease has spread too far; or the patient is too weak for an operation. One promising approach is giving chemotherapy or radiation before surgery to shrink the cancerous area. And there's hope that endoscopic surgery – performed through small incisions with tiny surgical instruments and video cameras – might some day produce comparable benefits with less trauma.

Radiation therapy

When surgery isn't possible, radiation may be able to kill cancerous cells. Clinical trials are investigating new treatment schedules, such as giving smaller but more frequent doses of radiation. A new form of radiation treatment, called brachytherapy, uses a bronchoscope to irradiate tumors from inside the lung; this can provide significant symptomatic relief for people with advanced lung cancer.

Chemotherapy

Chemotherapy is an option when surgery isn’t possible. In addition, doctors use anticancer drugs in combination with surgery or radiation, to kill any undetected cancer cells that remain in the body. So far, sadly, there’s no magic bullet. A new chemotherapeutic agent, Navelbine, a derivative of the mistletoe plant, recently received FDA approval for treating advanced lung cancer; it prolongs survival by an average of just two months. Many investigations simply aim to fine-tune existing chemotherapy regimens. “Studies might look at alternating different drugs, or at different doses or timing,” explains Dr. Jett. Such adjustments don't sound dramatic, but they've increased the chances of two-year survival for one form of lung cancer from 20 percent to nearly 40 percent.

Donna was diagnosed with a series of tests, starting with the chest x-ray and CAT scan. The following Wednesday the surgeon extracted the liquid from her right lung via a straw-size tube inserted through her back, and confirmed the presence of cancer cells. A week later she went to the hospital for two additional procedures – one to remove a sample of tumor tissue and the other to examine the area around her lungs.

As Donna lay in the recovery room, the surgeon met with her family and friends. His report was devastating: The cancer had spread beyond her right lung and invaded the lining of her chest. Surgical treatment was out of the question. “There’s really nothing we can do,” he told them. Only her sister, a nurse, managed to speak. “Is there any point in trying chemotherapy?” she asked. The surgeon was noncommittal: “You’ll have to decide if you want her to go through that,” he said.

“The terrible odds just made me more determined,” Donna says. “Jon and I knew medicine wasn’t going to do it all. We knew we had to trust God more than we’d ever had to before.”

Two weeks later, Donna went to her doctor’s office for her first chemotherapy session. “Somewhere in the back of my mind I’d been thinking it had to be a dream,” she says. When the nurse hooked her up to the IV, reality hit hard. “I cried the whole time,” says Donna. Another low point came a week later, when her hair started to fall out. But Donna’s characteristic determination quickly took over. “I decided that if the chemo was killing my hair cells, it must be killing the cancer too,” she says.

After six months of chemotherapy, the CAT scan showed a remarkable change: the larger tumors had gotten smaller; the smaller ones had disappeared all together. Donna’s lung cancer was in partial remission. Her doctor explained: “Your tumors are sleeping, but they’re still there.” Donna asked, “How long will they sleep?” He replied, “There’s no way to tell. It could be months; it could be years.”

• • • • •

Donna’s cancer remained in partial remission for more than a year. Then April 22, 1996, the dry cough returned. She says, “I had an x-ray that day, then a CAT scan. I wasn’t surprised when I got the results: the cancer was back.”

Chemotherapy – with a new combination of stronger drugs – was even more grueling the second time around. “I couldn’t do anything but lie down because of all the nausea,” Donna says. “I’d become disoriented; I’d lose my memory. There was a terrible metallic taste in my mouth, so bad that it woke me up during the night.”

Another challenge has been reassuring her daughter. Says Donna, “She was in fifth grade when I was diagnosed, and they were studying lung cancer. All her friends were coming up to her in school and asking, ‘Jessica, is your mom going to die?’” Donna and Jon have not concealed the truth. “We tell her that yes, I could die – but we also remind her that her grandmother and many other people she knows have had cancer, and they’re all alive today.”

Prayer and her Christian faith, Donna says, sustain her – along with support from her family and many friends (she’s received more than 600 “Get Well” cards). “When I have chemo, my church brings in meals for my family – meat, vegetables, salad, homemade pies and everything – and our pastor gives updates on my condition from the pulpit.”

Today Donna’s cancer is once again in partial remission, and she’s eagerly looking forward to a Caribbean cruise with her family next spring . But she gently corrects the well-meaning friends who tell her that in five years she’ll be considered cancer-free: “I’ve never been able to start counting, because the tumors are still there. In a day, my life could change again.” Nevertheless she remains upbeat. “I’m an optimistic person by nature – and a real fighter,” she says. “There’s no way I’m giving in.”

Postscript

Donna Purple's seven-year battle with lung cancer ended on September 24, 2001. Donna fought bravely, not only for herself, but for others. She became a spokesperson for lung cancer patients, traveling all over the United States and even to Italy to address medical professionals. She told them that she represented “the new face of lung cancer.” As a young woman who'd never smoked, she didn't match the typical patient profile; moreover, she was surviving and actually thriving despite advanced disease. Donna also reached out to her fellow lung cancer survivors as an ALCASE Phone Buddy. “Helping others gives a purpose to what I'm going through,” she said.

Donna endured nine chemotherapy regimens. Some of them were tough. Nevertheless, in the weeks and months between treatments, Donna thoroughly enjoyed her life. She traveled with her husband Jon, worked, and participated in her community. Most important of all: she lived to see her beloved daughter Jessica grow from age 10 to age 17. She will be missed by her loving family and friends, as well as by the many lung cancer survivors and advocates for whom she will always be an inspiration.

Quotes from Donna and other lung cancer survivors are featured in Lung Cancer: Myths, Facts, Choices - and Hope, by Dr. Claudia Henschke of Cornell University, Peggy McCarthy, patient advocate, and Sarah Wernick (W.W. Norton, 2003). The book was winner of the 2003 June Roth Memorial Award for Health and Medical Books from the American Society of Journalists and Authors, as well as first place winner for trade books in the 2003 Medical Book Awards Competition of the American Medical Writers Association.

© 1997 and 2007, Sarah Wernick. This article is not to be reproduced or distributed in any manner or medium without the written permission of the author.