Fighting Breathlessness

A recent and rare look at long-term lung cancer survivors shows breathlessness among them is persistent and common.

The news is not, however, a surprise to Eileen Cody.

Cody, 38, of Foxboro, Mass., had her right lung chipped away over the course of three surgeries. In 2006, she was diagnosed with stage 1B non-small cell lung cancer in the lower lobe. She underwent a lobectomy and four months of chemotherapy for the 5-centimeter tumor.

By December 2007, cancer was confirmed in the upper lobe, and a wedge resection was performed.

After multiple nodules were found in 2008, she underwent more chemo and the rest of the lung was removed. “That was the hardest time to adjust,” says Cody, a registered nurse who at that point saw her breathing decline and went on disability. Now she has to sit and catch her breath after climbing stairs. She finds it hard to take in New England’s frigid winter air—and to enjoy the outdoors with her young sons, ages 6 and 8.

“Even with the simplest of activities, gardening or even talking on the phone, I have to stop and rest,” she says. “I’ve learned to set priorities—I pick what needs to be done right then and there.”

A recent study found that shortness of breath, abbreviated casually as SOB and known technically as dyspnea, afflicted 60 percent of long-term survivors who had undergone surgery for stage 1 non-small cell lung cancer. Almost 40 percent of the patients did not have dyspnea at the time of surgery.

The study of 342 patients treated one to six years earlier, was published in August in the Journal of Thoracic Oncology.

“Lung cancer is such a common cancer that even if you assume a 15 percent overall survival rate, that’s about 30- or 40,000 a year, or about half a million survivors out there. And there’s precious little in the literature about how they feel or what they go through,” says Marc Feinstein, MD, of Memorial Sloan-Kettering Cancer Center in New York City, lead author of the study.

The researchers determined patients had dyspnea if tasks, like carrying groceries or climbing a flight or two of stairs, left them breathless. “It can be pretty limiting,” Feinstein says, “and not being able to catch your breath can be very scary.”

However, respiratory therapy can offer some relief, says Debbie Koehl, MS, RRT-NPS, AE-C, chair of the American Association for Respiratory Care’s Continuing Care/Rehabilitation Section. For instance, she notes that people tend to hold their breath during exertion. Instead, therapists advise breathing out on the exertion and breathing in during the rest activity—for example on stairs, exhaling while taking a step and inhaling while pausing atop each one. “Exhale on the exertion,” Koehl urges, “no matter what you’re doing.”

Several years after her lung cancer treatment, retired medical secretary Joan Bourguignon was finding it harder and harder to do daily tasks. Making a bed with fresh sheets would leave her spent for 10 minutes.

Bourguignon, 78, of Calabash, N.C., had been diagnosed in July 2003 with stage 3B non-small cell cancer in her lower right lung. Although the cancer was too far along for surgery, she had radiation and chemotherapy.

“I kept telling my oncologist at checkups every three months that I’m getting short of breath,” Bourguignon recalls. “He said, ‘Your lung is not what it used to be—what do you expect?’ ”

Finally, she saw a pulmonologist. Now she’s on oxygen 24/7, with a 50-foot plastic hose that follows her through her house, and a portable tank for when she goes out.

“It’s hard to travel because there are so many things you have to bring with you,” she says. And the summer heat keeps her indoors. “Even with oxygen it’s still hard to breathe out there,” she says.

In the study of survivors, researchers pondered just what circumstances might be linked to long-term breathlessness, such as obesity and type and extent of surgery.

The research revealed four factors related to development of dyspnea:

> Whether dyspnea was present before surgery

> Whether, in breathing tests before surgery, the patient had a lower diffusing capacity—a measure reflecting how easily the lungs get oxygen from the air to the hemoglobin molecule in the blood

> Lack of exercise

> Depression

The study could not determine cause and effect—for instance, it is not known whether lack of exercise contributed to breathlessness, or breathlessness prevented people from exercising, Feinstein notes. While researchers figure that out, he suggests it may be helpful for lung cancer survivors to work with their physicians to treat depression and boost their levels of physical activity, where appropriate.

Undiagnosed or untreated depression can influence a patient’s overall coping, Koehl adds. Also, depression is commonly accompanied by anxiety. “A lot of times anxiety leads to shortness of breath, and then shortness of breath leads to more anxiety. It’s a vicious cycle,” she says. With rehabilitation, therapists can desensitize patients to that anxious feeling.

Koehl also believes in the benefits of physical activity when possible. Patients in pulmonary rehabilitation—some of whom were treated for chronic obstructive pulmonary disease before they developed lung cancer—have told her exercise has helped their physical and mental health.

“Exercise improves your overall well-being,” she says. “It improves your muscle strength. You’re taking deeper breaths. You get your heart moving.”

The researchers, meanwhile, note that studies show exercise can improve health for patients with various other lung diseases, and that research in lung cancer patients has shown pulmonary rehabilitation just after surgery can improve the distance they can walk in a set period of time.

Meanwhile, in coming to terms with her limitations, Cody says something else is what really gets her heart moving: her family.

“I may not be able to do the potato sack races,” she says, “but I’ll be at the finish line rooting my kids on.”