Patti Carter was a 33-year-old nonsmoking mother of four when she was diagnosed with lung cancer. Her story can teach all moms lessons about listening to your gut, preventing the disease, and keeping life in perspective.
The summer of her 31st birthday, Patti Carter originally thought her hand was broken, that's how bad the pain was. But she also started to feel a constant, dull ache along her entire left side. From her shoulder to her knee, the pain burned way down deep, almost as if it were in her bones. Even more concerning, when she would lie down in bed at night, the ache often spread to her chest, making it tough to breathe. A stay-at-home mom of three kids under the age of 11, Carter found herself skipping activities she used to dive into happily--she just didn't have the same boundless energy she used to.
She went to doctor after doctor but no one could figure out what was wrong with her. She'd never had allergies or respiratory trouble, and X-rays didn't reveal arthritis or any other joint problems. "I knew something was wrong," she says. "I just had a feeling." It wasn't until a couple of months later when she was in the hospital for an unrelated surgery for endometriosis, a disease of the reproductive system, that she got tangible proof: After she became seriously short of breath following the procedure, a chest CT scan revealed an ominous shadow. "The doctor told me he found a nodule on my lung--that it could be cancer and that I needed to see a pulmonologist."
A PET scan didn't show anything significant, however, so the lung specialist she saw wasn't concerned. "He told me, 'You don't smoke; you're young. We'll do a follow-up scan in a year,'" she recalls. It's true that the median age for a lung-cancer diagnosis is 70 and that smoking causes about 85 percent of all lung cancers in the U.S. (People who quit have a lower risk of lung cancer than if they had continued to smoke, but it's higher than the risk for people who have never smoked.) Carter was still worried, but she tried to think positively and move on.
Her symptoms never went away, though. In fact, when she went on to become pregnant, she had to see a pulmonologist for breathing difficulties. Her fourth child was born in 2008 and while it was a happy time, Carter couldn't ignore the little voice inside her that said the spot in her lung was cancer. She didn't give up--and finally, after two years, three follow-up scans, referrals to three more doctors, and incorrect diagnoses of everything from a lung infection to asthma, a thoracic surgeon at Northside Hospital in Atlanta--less than an hour's drive from their town of Canton, Georgia--sat down with Carter and her husband, Waylon, after looking at her scans. He said, "I don't know what that spot in your lung is, but it's growing and that's not good." He conferenced with several other pulmonologists and cancer experts around the country, who all agreed that the nodule had to come out.
At the incredibly young age of 33, Carter had the entire lower lobe of her lung removed and was then diagnosed with stage 1B non-small-cell lung cancer. Non-small-cell, the most common type, usually spreads more slowly than small-cell lung cancer.
Carter is one of the approximately 225,000 people in the U.S. who are diagnosed with lung cancer each year. Nonsmokers make up about 10 to 20 percent of all cases, and some studies suggest that those rates--especially among women--may be going up. Although lung cancer kills more Americans than any other cancer, it receives less government funding for research than other cancers. And it's often found later than other cancers, in part because people often mistake symptoms for other problems.
"A stigma that surrounds lung cancer--that sufferers bring it on themselves--makes it less attractive to donors who might fund research," explains Andrea Stern Ferris, president of LUNGevity Foundation, a nonprofit focused on lung-cancer research, support, and education. It was founded by survivors and has funded 100 studies in 23 states since 2000. "Lung-cancer research receives one tenth of the funding that breast cancer does, but there are almost twice as many women dying of lung cancer," says John Heymach, M.D., Ph.D., an oncologist at MD Anderson Cancer Center, in Houston, who is studying treatments with funding from LUNGevity. In fact, the five-year survival rate for lung cancer is depressingly low--just 16 percent.
How Cancer Grows, Even in Nonsmokers
Cancer starts when damage to DNA causes cells in one part of the body to grow out of control and invade other tissues. You can inherit damaged DNA, but it's usually caused by mistakes that happen while the cell is reproducing or by something in our environment. Our DNA is damaged in hundreds of little ways on a daily basis: from the sun's UV rays, pollutants like benzene or arsenic in the water supply, and poisons like radon that can seep up from the earth and into our home. Radon--a naturally occurring gas created when radioactive uranium decays deep in the soil--is thought to be the second leading cause of lung cancer after cigarette smoking, making it responsible for up to roughly 22,000 deaths a year.
Although she'll never know for sure, Carter suspects radon may be partly to blame for her own illness. Her hometown of Ogdensburg, New Jersey, was a mining town and there's a geographic formation in the area that's rich with uranium. Called the Reading Prong, it stretches from Pennsylvania through parts of New Jersey to southern New York, and New Jersey's Department of Environmental Protection has declared radon to be a health concern for the entire state because of it. Although other affected areas include Montana and Wyoming, radon can be found anywhere in the country, which is why the Environmental Protection Agency recommends that all homeowners test their home. If your house tests positive, contact your state radon office. You may need to hire a contractor specifically qualified in radon mitigation to suction your soil, repair your home's foundation, or install a ventilation system to eliminate your exposure.
Of course, not everyone who is exposed to radon -- or any other DNA-harming substance -- goes on to develop lung cancer. Researchers are trying to understand why some people are prone to those cellular injuries while others aren't, hoping that it will lead them to better testing and treatments for cancer in general. "We've found many genetic differences between people who get lung cancer and those who don't," says Pierre Massion, M.D., professor of medicine and cancer biology at Vanderbilt University School of Medicine, in Nashville. "It may be that your cells allow you to deal with diesel fumes or cigarettes, but my cells can't handle them because my genetic machinery does not easily correct these mutations in my DNA."
Better Treatments on the Way
Fortunately, Carter's lung cancer was found at an early stage, before it had a chance to spread to her lymph nodes or other organs. "My doctors were pretty optimistic. But no matter when you find it, lung cancer doesn't have a good prognosis," she says. Only about half of patients whose cancer is caught at stage 1 survive at least five years, partly because lung cancer tends to grow quickly, and come back.
There are three FDA-approved medications -- all of which are more effective than chemotherapy and have fewer side effects -- designed for lung cancers containing certain genetic mutations. These drugs work by blocking molecular signals that cause the cancer to grow in the first place. But only about 16 percent of lung cancers have one of these two mutations, says Dr. Heymach.
Carter's tumor didn't have one of the mutations, nor did it have clear margins, so she was left with a difficult decision: to rely on surgery alone or add chemotherapy, not knowing how much it would actually help. "My oncologist, who is a young mom herself, said, 'You're young, you have four kids, and we've got to make sure you live a long time. If this were happening to me, I'd do the chemo,'" Carter explains. "She told me how bad the chemo would make me feel, but I didn't grasp it." The six-hour intravenous sessions left her so nauseated and weak that she couldn't get out of bed for days afterward. Her hair didn't fall out, but a lot of it--and her eyebrows--turned gray.
Carter wanted to quit by the second treatment, but she held on and made it through five cycles. "The hardest thing for me was hearing my kids talking and playing downstairs and not being able to get up to see them. I had a baby and I couldn't even hold him," says Carter. In addition, her 7-year-old daughter, Carly, has a rare chromosomal disorder; she is also on the autism spectrum, is nonverbal, and has epilepsy. "We had to have so much help taking care of all of our kids, but especially Carly," Carter explains. Her family rallied around to help. "My dad is retired, and he and my sister would watch the younger kids. My husband's company told him he could take as much time off as he needed to -- and he did, but it was tough for us financially," she says.
Today, nearly four years after being diagnosed, Carter is in remission. "The realist in me thinks that lung cancer will get me eventually. But the mom part of me won't allow myself to dwell on that," she says. Instead, she is making up for lost time with her children, who have grown immensely from the family's ordeal. "My 15-year-old, Nikki, is so different from girls her age -- she doesn't go for the petty drama of this one likes that one's boyfriend or whatever," she explains. Both she and daughter Kerrison, who's 11, have asked for donations to charities in lieu of presents for their birthdays every year since their mom was diagnosed. Says Carter: "We all know what's really important now: just us, being happy, taking life as it comes and enjoying it together."
CT scans can screen for lung cancer before there are any symptoms of the disease, but to qualify you must be between ages 55 and 74 and be a current or former smoker. So it's crucial to be aware of the possible symptoms. If you or someone you love has any of the following issues, see your doctor right away. Also talk to your doctor about any family history of cancer or individual risk factors such as radon or asbestos exposure, or a history of smoking or being around secondhand smoke.
- Persistent or chronic cough
- Fatigue that doesn't go away with rest
- Bone or joint pain
- Recurring chest, shoulder, or back pain that may feel like a constant ache
- Neurological symptoms, such as unsteady gait or memory loss
- Neck or facial swelling
- Vocal hoarseness
- Shortness of breath
3 Ways to Protect Yourself Against Lung Cancer
1. Avoid cigarettes. The number-one way to reduce your risk of lung cancer is to avoid tobacco smoke--your own or anyone else's. Ten years after quitting smoking, a person's risk for lung cancer is reduced by 30 to 50 percent.
2. Test your home for radon. This gas is a colorless, odorless, naturally occurring poison that can seep up from the earth into homes and other buildings. Find out how to get a test at epa.gov/ radon--kits can be as inexpensive as $15.
3. Eat at least 2 1/2 cups of produce a day. Studies have suggested that eating plenty of fruits and vegetables daily can lower lung-cancer risk.
Originally published in the December 2013 issue of Parents magazine.
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